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/_next/image?url=https%3A%2F%2Fcdn.sanity.io%2Fimages%2F0vv8moc6%2Fajmc%2F04911fb30ca10bd9813f8dee0c09202524304642-6000x4000.jpg%3Ffit%3Dcrop%26auto%3Dformat&w=1200&q=75 1200w, /_next/image?url=https%3A%2F%2Fcdn.sanity.io%2Fimages%2F0vv8moc6%2Fajmc%2F04911fb30ca10bd9813f8dee0c09202524304642-6000x4000.jpg%3Ffit%3Dcrop%26auto%3Dformat&w=1920&q=75 1920w, /_next/image?url=https%3A%2F%2Fcdn.sanity.io%2Fimages%2F0vv8moc6%2Fajmc%2F04911fb30ca10bd9813f8dee0c09202524304642-6000x4000.jpg%3Ffit%3Dcrop%26auto%3Dformat&w=2048&q=75 2048w, /_next/image?url=https%3A%2F%2Fcdn.sanity.io%2Fimages%2F0vv8moc6%2Fajmc%2F04911fb30ca10bd9813f8dee0c09202524304642-6000x4000.jpg%3Ffit%3Dcrop%26auto%3Dformat&w=3840&q=75 3840w" src="/_next/image?url=https%3A%2F%2Fcdn.sanity.io%2Fimages%2F0vv8moc6%2Fajmc%2F04911fb30ca10bd9813f8dee0c09202524304642-6000x4000.jpg%3Ffit%3Dcrop%26auto%3Dformat&w=3840&q=75" decoding="async" data-nimg="fill" style="position:absolute;top:0;left:0;bottom:0;right:0;box-sizing:border-box;padding:0;border:none;margin:auto;display:block;width:0;height:0;min-width:100%;max-width:100%;min-height:100%;max-height:100%" class="object-contain" loading="lazy"/></noscript></span></a></div><div class="border-t-gray-100 border-t-2 flex-auto py-2 "><span class="text-sm text-gray-500 py-2">November 15th 2024</span><div class="py-3"><a class="lg:text-[20px] text-[19px] font-[500]" href="/view/dmd-gene-therapy-elevidys-fails-to-meet-primary-endpoint-in-phase-3-study">Delandistrogene Moxeparvovec Fails to Meet Primary End Point in Phase 3 Study </a></div><div class="pb-2"><div><span class="text-md "><span class="mr-1 italic">By </span><a class="mr-1 text-sky-800 hover:text-primary" href="/authors/ajmc-contributor"><i>AJMC Contributor</i></a></span></div></div><a href="/view/dmd-gene-therapy-elevidys-fails-to-meet-primary-endpoint-in-phase-3-study"><a href="/view/dmd-gene-therapy-elevidys-fails-to-meet-primary-endpoint-in-phase-3-study"><p class="mt-1 text-gray-800 text-[13px] line-clamp-6 text-hidden">Put up against placebo in the phase 3 EMBARK trial, delandistrogene moxeparvovec (Elevidys) did not significantly improve function after 52 weeks.</p></a></a></div></div><div class="flex-wrap w-[60%] flex "><a class="flex w-[50%] flex-col sm:pl-[35px] pl-[20px] pb-[35px] " href="/view/shared-decision-making-is-essential-prior-to-sma-enhancing-treatments"><div class="w-full lg:h-[134px] h-[100px] relative bg-default-logo-background "><span style="box-sizing:border-box;display:block;overflow:hidden;width:initial;height:initial;background:none;opacity:1;border:0;margin:0;padding:0;position:absolute;top:0;left:0;bottom:0;right:0"><img alt="" src="data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7" decoding="async" data-nimg="fill" class="lg:object-cover object-contain " 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class="text-sm text-gray-500">October 28th 2024</span></a><div><a class="text-[14px]" href="/view/oral-function-impairment-varies-across-adult-patients-with-sma"><p class="line-clamp-4 text-hidden font-[500]">Oral Function Impairment Varies Across Adult Patients With SMA</p></a></div><div class="py-2"><div><span class="text-md "><span class="mr-1 italic">By </span><a class="mr-1 text-sky-800 hover:text-primary" href="/authors/karen-jacobson-sive"><i>Karen Jacobson-Sive</i></a></span></div></div></div></a><a class="flex w-[50%] flex-col sm:pl-[35px] pl-[20px] pb-[35px] " href="/view/protein-level-correlates-with-pediatric-sma-severity-treatment-response"><div class="w-full lg:h-[134px] h-[100px] relative bg-default-logo-background "><span style="box-sizing:border-box;display:block;overflow:hidden;width:initial;height:initial;background:none;opacity:1;border:0;margin:0;padding:0;position:absolute;top:0;left:0;bottom:0;right:0"><img alt="" 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holding teddy bear | Image credit: VadimGuzhva – stock.adobe.com" width="288" class="jsx-ad50481d5ee26850 w-full xs:w-[288px] "/></a><div class="jsx-ad50481d5ee26850 article-detail flex flex-col gap-[0.2rem] w-full sm:w-[46%] md:w-[65%]"><span class="jsx-ad50481d5ee26850 font-bold article-publish-date block italic text-sm text-gray-500 mt-[1rem] sm:mt-0">October 7th 2024</span><p class="jsx-ad50481d5ee26850 article-title font-bold text-[1rem]"><a class="jsx-ad50481d5ee26850" href="/view/substantial-delays-in-postapproval-pediatric-testing-for-new-drugs">Substantial Delays in Postapproval Pediatric Testing for New Drugs</a></p><div class="jsx-ad50481d5ee26850 authors flex-row wrap gap-[0.2rem]"><a class="jsx-ad50481d5ee26850 text-[#000] text-sm italic" href="/authors/hayden-e-klein">Hayden E. Klein</a></div><div class="jsx-ad50481d5ee26850 article-summary"><a class="jsx-ad50481d5ee26850" href="/view/substantial-delays-in-postapproval-pediatric-testing-for-new-drugs"><div class="jsx-ad50481d5ee26850 text-sm text-gray-500 py-1">Less than a third of FDA-mandated trials for drugs approved between 2015 and 2021 had been completed by May 2024.</div></a></div></div></div><div style="border-bottom:1px solid #CCCCCC" class="jsx-ad50481d5ee26850"></div></div><div class="jsx-ad50481d5ee26850 w-full h-full"><div class="jsx-ad50481d5ee26850 flex flex-col sm:flex-row justify-between my-4 "><a class="jsx-ad50481d5ee26850" href="/view/5-year-review-further-bolsters-support-for-newborn-sma-screening"><img src="https://cdn.sanity.io/images/0vv8moc6/ajmc/46cc98cba7554bb9d19fe855d6658fad88698ea8-5760x3034.jpg?fit=crop&auto=format" alt="Newborn screening can provide numerous benefits for infants who may have unknown conditions or complications | image credit: Peakstock - stock.adobe.com" width="288" class="jsx-ad50481d5ee26850 w-full xs:w-[288px] "/></a><div class="jsx-ad50481d5ee26850 article-detail flex flex-col gap-[0.2rem] w-full sm:w-[46%] md:w-[65%]"><span class="jsx-ad50481d5ee26850 font-bold article-publish-date block italic text-sm text-gray-500 mt-[1rem] sm:mt-0">October 3rd 2024</span><p class="jsx-ad50481d5ee26850 article-title font-bold text-[1rem]"><a class="jsx-ad50481d5ee26850" href="/view/5-year-review-further-bolsters-support-for-newborn-sma-screening">5-Year Review Further Bolsters Support for Newborn SMA Screening </a></p><div class="jsx-ad50481d5ee26850 authors flex-row wrap gap-[0.2rem]"><a class="jsx-ad50481d5ee26850 text-[#000] text-sm italic" href="/authors/kyle-munz">Kyle Munz</a></div><div class="jsx-ad50481d5ee26850 article-summary"><a class="jsx-ad50481d5ee26850" href="/view/5-year-review-further-bolsters-support-for-newborn-sma-screening"><div class="jsx-ad50481d5ee26850 text-sm text-gray-500 py-1">A retrospective analysis on newborn screening for spinal muscular atrophy (SMA) provides further evidence for the benefits of early identification and treatment of the disease. </div></a></div></div></div><div style="border-bottom:1px solid #CCCCCC" class="jsx-ad50481d5ee26850"></div></div><div class="jsx-ad50481d5ee26850 w-full h-full"><div class="jsx-ad50481d5ee26850 flex md:hidden justify-center items-center"></div><div class="jsx-ad50481d5ee26850 flex flex-col sm:flex-row justify-between my-4 "><a class="jsx-ad50481d5ee26850" href="/view/new-research-unearths-evidence-of-metabolic-disruption-in-sma"><img src="https://cdn.sanity.io/images/0vv8moc6/ajmc/6445313cb23a06f6cad709653e7d5c8fdf4b78c3-5000x3250.jpg?fit=crop&auto=format" alt="SMA has previously been associated with multiple metabolic and nutritional issues | image credit: JEGAS RA - stock.adobe.com" width="288" class="jsx-ad50481d5ee26850 w-full xs:w-[288px] "/></a><div class="jsx-ad50481d5ee26850 article-detail flex flex-col gap-[0.2rem] w-full sm:w-[46%] md:w-[65%]"><span class="jsx-ad50481d5ee26850 font-bold article-publish-date block italic text-sm text-gray-500 mt-[1rem] sm:mt-0">September 21st 2024</span><p class="jsx-ad50481d5ee26850 article-title font-bold text-[1rem]"><a class="jsx-ad50481d5ee26850" href="/view/new-research-unearths-evidence-of-metabolic-disruption-in-sma">New Research Unearths Evidence of Global Metabolic Disruption in Patients With SMA</a></p><div class="jsx-ad50481d5ee26850 authors flex-row wrap gap-[0.2rem]"><a class="jsx-ad50481d5ee26850 text-[#000] text-sm italic" href="/authors/kyle-munz">Kyle Munz</a></div><div class="jsx-ad50481d5ee26850 article-summary"><a class="jsx-ad50481d5ee26850" href="/view/new-research-unearths-evidence-of-metabolic-disruption-in-sma"><div class="jsx-ad50481d5ee26850 text-sm text-gray-500 py-1">A recent analysis investigated the state of metabolic disruption experienced by patients with spinal muscular atrophy (SMA), adding to the literature on nutritional and metabolic complications linked to SMA. </div></a></div></div></div><div style="border-bottom:1px solid #CCCCCC" class="jsx-ad50481d5ee26850"></div></div><div class="jsx-ad50481d5ee26850 w-full h-full"><div class="jsx-ad50481d5ee26850 flex flex-col sm:flex-row justify-between my-4 "><a class="jsx-ad50481d5ee26850" href="/view/decision-making-in-sma-complicated-by-insufficient-treatment-comparison"><img src="https://cdn.sanity.io/images/0vv8moc6/ajmc/e32d368ab659149e3f5832f8d1ee9c58ea889e90-5376x3584.jpg?fit=crop&auto=format" alt="Clinical decision-making in SMA could benefit from more comprehensive trial data comparing SMA treatments | image credit: HASAN - stock.adobe.com" width="288" class="jsx-ad50481d5ee26850 w-full xs:w-[288px] "/></a><div class="jsx-ad50481d5ee26850 article-detail flex flex-col gap-[0.2rem] w-full sm:w-[46%] md:w-[65%]"><span class="jsx-ad50481d5ee26850 font-bold article-publish-date block italic text-sm text-gray-500 mt-[1rem] sm:mt-0">September 19th 2024</span><p class="jsx-ad50481d5ee26850 article-title font-bold text-[1rem]"><a class="jsx-ad50481d5ee26850" href="/view/decision-making-in-sma-complicated-by-insufficient-treatment-comparison">Decision-Making in SMA Complicated by Insufficient Treatment Comparison</a></p><div class="jsx-ad50481d5ee26850 authors flex-row wrap gap-[0.2rem]"><a class="jsx-ad50481d5ee26850 text-[#000] text-sm italic" href="/authors/nameera-temkar-md">Nameera Temkar, MD</a></div><div class="jsx-ad50481d5ee26850 article-summary"><a class="jsx-ad50481d5ee26850" href="/view/decision-making-in-sma-complicated-by-insufficient-treatment-comparison"><div class="jsx-ad50481d5ee26850 text-sm text-gray-500 py-1">Clinical decision-making can be difficult for patients with SMA due to the lack of clinical trials comparing treatment options. </div></a></div></div></div><div style="border-bottom:1px solid #CCCCCC" class="jsx-ad50481d5ee26850"></div></div><div class="jsx-ad50481d5ee26850 w-full h-full"><div class="jsx-ad50481d5ee26850 flex flex-col sm:flex-row justify-between my-4 "><a class="jsx-ad50481d5ee26850" href="/view/higher-dose-nusinersen-meets-primary-end-point-in-phase-2-3-devote-study-for-spinal-muscular-atrophy"><img src="https://cdn.sanity.io/images/0vv8moc6/ajmc/567de38f26ce65e5f995fdab0a6990db7a0b9b02-3508x2480.jpg?fit=crop&auto=format" alt="Nusinersen was the first FDA-approved drug for the treatment of SMA in pediatric and adult patients in December 2016 | image credit: AGPhotography - stock.adobe.come" width="288" class="jsx-ad50481d5ee26850 w-full xs:w-[288px] "/></a><div class="jsx-ad50481d5ee26850 article-detail flex flex-col gap-[0.2rem] w-full sm:w-[46%] md:w-[65%]"><span class="jsx-ad50481d5ee26850 font-bold article-publish-date block italic text-sm text-gray-500 mt-[1rem] sm:mt-0">September 17th 2024</span><p class="jsx-ad50481d5ee26850 article-title font-bold text-[1rem]"><a class="jsx-ad50481d5ee26850" href="/view/higher-dose-nusinersen-meets-primary-end-point-in-phase-2-3-devote-study-for-spinal-muscular-atrophy">Higher-Dose Nusinersen Meets Primary End Point in Phase 2/3 DEVOTE Study for Spinal Muscular Atrophy</a></p><div class="jsx-ad50481d5ee26850 authors flex-row wrap gap-[0.2rem]"><a class="jsx-ad50481d5ee26850 text-[#000] text-sm italic" href="/authors/isabella-ciccone-mph">Isabella Ciccone, MPH</a></div><div class="jsx-ad50481d5ee26850 article-summary"><a class="jsx-ad50481d5ee26850" href="/view/higher-dose-nusinersen-meets-primary-end-point-in-phase-2-3-devote-study-for-spinal-muscular-atrophy"><div class="jsx-ad50481d5ee26850 text-sm text-gray-500 py-1">Based on the positive topline data, the company plans to submit for regulatory approval for a higher dose of nusinersen for spinal muscular atrophy (SMA) treatment.</div></a></div></div></div><div style="border-bottom:1px solid #CCCCCC" class="jsx-ad50481d5ee26850"></div></div><div class="jsx-ad50481d5ee26850 w-full h-full"><div class="jsx-ad50481d5ee26850 flex flex-col sm:flex-row justify-between my-4 "><a class="jsx-ad50481d5ee26850" href="/view/fatiguability-in-sma-may-benefit-from-nusinersen-but-further-research-is-needed"><img src="https://cdn.sanity.io/images/0vv8moc6/ajmc/d8de599bce63e2591c72b91f754893b502b21685-5250x3500.jpg?fit=crop&auto=format" alt="The 6-Minute Walking Test is a common tool for measuring fatiguability in SMA | image credit: Antonioguillem - stock.adobe.com" width="288" class="jsx-ad50481d5ee26850 w-full xs:w-[288px] "/></a><div class="jsx-ad50481d5ee26850 article-detail flex flex-col gap-[0.2rem] w-full sm:w-[46%] md:w-[65%]"><span class="jsx-ad50481d5ee26850 font-bold article-publish-date block italic text-sm text-gray-500 mt-[1rem] sm:mt-0">August 28th 2024</span><p class="jsx-ad50481d5ee26850 article-title font-bold text-[1rem]"><a class="jsx-ad50481d5ee26850" href="/view/fatiguability-in-sma-may-benefit-from-nusinersen-but-further-research-is-needed">Nusinersen May Improve Fatiguability in SMA, but More Research Is Needed </a></p><div class="jsx-ad50481d5ee26850 authors flex-row wrap gap-[0.2rem]"><a class="jsx-ad50481d5ee26850 text-[#000] text-sm italic" href="/authors/kyle-munz">Kyle Munz</a></div><div class="jsx-ad50481d5ee26850 article-summary"><a class="jsx-ad50481d5ee26850" href="/view/fatiguability-in-sma-may-benefit-from-nusinersen-but-further-research-is-needed"><div class="jsx-ad50481d5ee26850 text-sm text-gray-500 py-1">Findings from an Italian cohort suggest that nusinersen may benefit fatigue measures in patients with spinal muscular atrophy (SMA) type III; however, drawing definitive conclusions in this area remains difficult. </div></a></div></div></div><div style="border-bottom:1px solid #CCCCCC" class="jsx-ad50481d5ee26850"></div></div><div class="jsx-ad50481d5ee26850 w-full h-full"><div><div><div class="text-[8px] text-center text-gray-500 hidden">Advertisement</div><div id="div-gpt-ad-infeed-7"></div></div></div><div class="jsx-ad50481d5ee26850 flex flex-col sm:flex-row justify-between my-4 "><a class="jsx-ad50481d5ee26850" href="/view/smn-depletion-may-increase-risk-of-liver-damage-fatty-liver-in-sma"><img src="https://cdn.sanity.io/images/0vv8moc6/ajmc/ea840df9cead0ba4acb662a60d766b97f74cf9d0-4200x2700.jpg?fit=crop&auto=format" alt="The SMN protein is expressed thoughout many body tissues types, including the liver | image credit: Rasi - stock.adobe.com" width="288" class="jsx-ad50481d5ee26850 w-full xs:w-[288px] "/></a><div class="jsx-ad50481d5ee26850 article-detail flex flex-col gap-[0.2rem] w-full sm:w-[46%] md:w-[65%]"><span class="jsx-ad50481d5ee26850 font-bold article-publish-date block italic text-sm text-gray-500 mt-[1rem] sm:mt-0">August 22nd 2024</span><p class="jsx-ad50481d5ee26850 article-title font-bold text-[1rem]"><a class="jsx-ad50481d5ee26850" href="/view/smn-depletion-may-increase-risk-of-liver-damage-fatty-liver-in-sma">SMN Depletion May Increase Risk of Liver Damage, Fatty Liver in SMA</a></p><div class="jsx-ad50481d5ee26850 authors flex-row wrap gap-[0.2rem]"><a class="jsx-ad50481d5ee26850 text-[#000] text-sm italic" href="/authors/kyle-munz">Kyle Munz</a></div><div class="jsx-ad50481d5ee26850 article-summary"><a class="jsx-ad50481d5ee26850" href="/view/smn-depletion-may-increase-risk-of-liver-damage-fatty-liver-in-sma"><div class="jsx-ad50481d5ee26850 text-sm text-gray-500 py-1">A retrospective, single-center cohort study utilized liver ultrasound, serum collection, and proteome analysis to draw associations between spinal motor neuron (SMN) protein depletion and heightened risk for fatty liver disease in spinal muscular atrophy (SMA). </div></a></div></div></div><div style="border-bottom:1px solid #CCCCCC" class="jsx-ad50481d5ee26850"></div></div><div class="jsx-ad50481d5ee26850 w-full h-full"><div class="jsx-ad50481d5ee26850 flex flex-col sm:flex-row justify-between my-4 "><a class="jsx-ad50481d5ee26850" href="/view/virtual-reality-is-a-game-changer-during-blood-draws-for-pediatric-patients-with-sma"><img src="https://cdn.sanity.io/images/0vv8moc6/ajmc/59c533995a73aa1f3c94a2a54a665dfd69dab299-5477x2739.jpg?fit=crop&auto=format" alt="VR can reduce fear and anxiety associated with drawing blood in patients with SMA | image credit: matrosovv - stock.adobe.com" width="288" class="jsx-ad50481d5ee26850 w-full xs:w-[288px] "/></a><div class="jsx-ad50481d5ee26850 article-detail flex flex-col gap-[0.2rem] w-full sm:w-[46%] md:w-[65%]"><span class="jsx-ad50481d5ee26850 font-bold article-publish-date block italic text-sm text-gray-500 mt-[1rem] sm:mt-0">August 21st 2024</span><p class="jsx-ad50481d5ee26850 article-title font-bold text-[1rem]"><a class="jsx-ad50481d5ee26850" href="/view/virtual-reality-is-a-game-changer-during-blood-draws-for-pediatric-patients-with-sma">Virtual Reality Is a Game-Changer During Blood Draws for Pediatric Patients With SMA</a></p><div class="jsx-ad50481d5ee26850 authors flex-row wrap gap-[0.2rem]"><a class="jsx-ad50481d5ee26850 text-[#000] text-sm italic" href="/authors/abraham-homer-ms">Abraham Homer, MS</a></div><div class="jsx-ad50481d5ee26850 article-summary"><a class="jsx-ad50481d5ee26850" href="/view/virtual-reality-is-a-game-changer-during-blood-draws-for-pediatric-patients-with-sma"><div class="jsx-ad50481d5ee26850 text-sm text-gray-500 py-1">In honor of Spinal Muscular Atrophy (SMA) Awareness Month, Abraham Homer, MS, the gaming technology supervisor and creative technologist at Children's Hospital Colorado, shared how virtual reality transformed care for patients with SMA.</div></a></div></div></div><div style="border-bottom:1px solid #CCCCCC" class="jsx-ad50481d5ee26850"></div></div><div class="jsx-ad50481d5ee26850 w-full h-full"><div class="jsx-ad50481d5ee26850 flex md:hidden justify-center items-center"></div><div class="jsx-ad50481d5ee26850 flex flex-col sm:flex-row justify-between my-4 "><a class="jsx-ad50481d5ee26850" href="/view/new-motor-milestones-achieved-or-sustained-with-apitegromab-therapy-in-non-ambulatory-sma"><img src="https://cdn.sanity.io/images/0vv8moc6/ajmc/a642a49a556ba21dd35f8cd1718ce085123a954f-5163x2905.jpg?fit=crop&auto=format" alt="Apitegromab administered at 20mg/kg every 4 weeks lead to improvements in motor functions in patients with SMA | image credit: Justlight - stock.adobe.com" width="288" class="jsx-ad50481d5ee26850 w-full xs:w-[288px] "/></a><div class="jsx-ad50481d5ee26850 article-detail flex flex-col gap-[0.2rem] w-full sm:w-[46%] md:w-[65%]"><span class="jsx-ad50481d5ee26850 font-bold article-publish-date block italic text-sm text-gray-500 mt-[1rem] sm:mt-0">August 5th 2024</span><p class="jsx-ad50481d5ee26850 article-title font-bold text-[1rem]"><a class="jsx-ad50481d5ee26850" href="/view/new-motor-milestones-achieved-or-sustained-with-apitegromab-therapy-in-non-ambulatory-sma">New Motor Milestones Achieved or Sustained With Apitegromab in Nonambulatory SMA</a></p><div class="jsx-ad50481d5ee26850 authors flex-row wrap gap-[0.2rem]"><a class="jsx-ad50481d5ee26850 text-[#000] text-sm italic" href="/authors/kyle-munz">Kyle Munz</a></div><div class="jsx-ad50481d5ee26850 article-summary"><a class="jsx-ad50481d5ee26850" href="/view/new-motor-milestones-achieved-or-sustained-with-apitegromab-therapy-in-non-ambulatory-sma"><div class="jsx-ad50481d5ee26850 text-sm text-gray-500 py-1">The extension of the TOPAZ study provided support for the long-term benefits and safety of apitegromab therapy in patients with spinal muscular atrophy (SMA) at 36 months. </div></a></div></div></div><div style="border-bottom:1px solid #CCCCCC" class="jsx-ad50481d5ee26850"></div></div><div class="jsx-ad50481d5ee26850 w-full h-full"><div class="jsx-ad50481d5ee26850 flex flex-col sm:flex-row justify-between my-4 "><a class="jsx-ad50481d5ee26850" href="/view/nccn-guidelines-update-adds-momelotinib-below-ruxolitinib-for-high--low-risk-myelofibrosis"><img src="https://cdn.sanity.io/images/0vv8moc6/ajmc/b5a6db852f4d2366db6ae55b304f0e7133354222-5376x3584.jpg?fit=crop&auto=format" alt="Neoplasms, cancerous disease, malignant tumour | Ирина Батюк - stock.adobe.com" width="288" class="jsx-ad50481d5ee26850 w-full xs:w-[288px] "/></a><div class="jsx-ad50481d5ee26850 article-detail flex flex-col gap-[0.2rem] w-full sm:w-[46%] md:w-[65%]"><span class="jsx-ad50481d5ee26850 font-bold article-publish-date block italic text-sm text-gray-500 mt-[1rem] sm:mt-0">January 23rd 2024</span><p class="jsx-ad50481d5ee26850 article-title font-bold text-[1rem]"><a class="jsx-ad50481d5ee26850" href="/view/nccn-guidelines-update-adds-momelotinib-below-ruxolitinib-for-high--low-risk-myelofibrosis">NCCN Guidelines Update Adds Momelotinib Below Ruxolitinib for High-, Low-Risk Myelofibrosis </a></p><div class="jsx-ad50481d5ee26850 authors flex-row wrap gap-[0.2rem]"><a class="jsx-ad50481d5ee26850 text-[#000] text-sm italic" href="/authors/pearl-steinzor">Pearl Steinzor</a></div><div class="jsx-ad50481d5ee26850 article-summary"><a class="jsx-ad50481d5ee26850" href="/view/nccn-guidelines-update-adds-momelotinib-below-ruxolitinib-for-high--low-risk-myelofibrosis"><div class="jsx-ad50481d5ee26850 text-sm text-gray-500 py-1">Momelotinib was given category 2A and 2B status for patients with high- and low-risk myelofibrosis (MF) and MF with anemia. However, ruxolitinib retains a higher category of recommendation as a treatment for patients with MF. </div></a></div></div></div><div style="border-bottom:1px solid #CCCCCC" class="jsx-ad50481d5ee26850"></div></div><div class="jsx-ad50481d5ee26850 w-full h-full"><div class="jsx-ad50481d5ee26850 flex flex-col sm:flex-row justify-between my-4 "><a class="jsx-ad50481d5ee26850" href="/view/top-5-most-read-rare-disease-articles-of-2023"><img src="https://cdn.sanity.io/images/0vv8moc6/ajmc/8a4bc11de661282d2a2806f364043b3fd0400bae-3187x1625.png?fit=crop&auto=format" alt="Top 5 Most-Read Rare Disease Articles of 2023" width="288" class="jsx-ad50481d5ee26850 w-full xs:w-[288px] "/></a><div class="jsx-ad50481d5ee26850 article-detail flex flex-col gap-[0.2rem] w-full sm:w-[46%] md:w-[65%]"><span class="jsx-ad50481d5ee26850 font-bold article-publish-date block italic text-sm text-gray-500 mt-[1rem] sm:mt-0">December 29th 2023</span><p class="jsx-ad50481d5ee26850 article-title font-bold text-[1rem]"><a class="jsx-ad50481d5ee26850" href="/view/top-5-most-read-rare-disease-articles-of-2023">Top 5 Most-Read Rare Disease Articles of 2023</a></p><div class="jsx-ad50481d5ee26850 authors flex-row wrap gap-[0.2rem]"><a class="jsx-ad50481d5ee26850 text-[#000] text-sm italic" href="/authors/pearl-steinzor">Pearl Steinzor</a></div><div class="jsx-ad50481d5ee26850 article-summary"><a class="jsx-ad50481d5ee26850" href="/view/top-5-most-read-rare-disease-articles-of-2023"><div class="jsx-ad50481d5ee26850 text-sm text-gray-500 py-1">The most-read rare disease articles include topics on increasing research and awareness on genetic and nongenetic rare diseases. </div></a></div></div></div><div style="border-bottom:1px solid #CCCCCC" class="jsx-ad50481d5ee26850"></div></div><div class="jsx-ad50481d5ee26850 w-full h-full"><div class="jsx-ad50481d5ee26850 flex flex-col sm:flex-row justify-between my-4 "><a class="jsx-ad50481d5ee26850" href="/view/interventions-needed-to-increase-dmt-uptake-in-sickle-cell-disease"><img src="https://cdn.sanity.io/images/0vv8moc6/ajmc/8af072bcac9a471495a04ec656aafa04af99a5a3-6000x4000.jpg?fit=crop&auto=format" alt="sickle cell disease | Image credit: Dr_Microbe - stock.adobe.com" width="288" class="jsx-ad50481d5ee26850 w-full xs:w-[288px] "/></a><div class="jsx-ad50481d5ee26850 article-detail flex flex-col gap-[0.2rem] w-full sm:w-[46%] md:w-[65%]"><span class="jsx-ad50481d5ee26850 font-bold article-publish-date block italic text-sm text-gray-500 mt-[1rem] sm:mt-0">December 26th 2023</span><p class="jsx-ad50481d5ee26850 article-title font-bold text-[1rem]"><a class="jsx-ad50481d5ee26850" href="/view/interventions-needed-to-increase-dmt-uptake-in-sickle-cell-disease">Interventions Needed to Increase DMT Uptake in Sickle Cell Disease</a></p><div class="jsx-ad50481d5ee26850 authors flex-row wrap gap-[0.2rem]"><a class="jsx-ad50481d5ee26850 text-[#000] text-sm italic" href="/authors/skylar-jeremias">Skylar Jeremias</a></div><div class="jsx-ad50481d5ee26850 article-summary"><a class="jsx-ad50481d5ee26850" href="/view/interventions-needed-to-increase-dmt-uptake-in-sickle-cell-disease"><div class="jsx-ad50481d5ee26850 text-sm text-gray-500 py-1">A recent study found that uptake of disease-modifying therapies (DMTs) has been low among patients with sickle cell disease, suggesting that more interventions that consider individual patient characteristics are needed to improve adoption. </div></a></div></div></div><div style="border-bottom:1px solid #CCCCCC" class="jsx-ad50481d5ee26850"></div></div><div class="jsx-ad50481d5ee26850 w-full h-full"><div><div><div class="text-[8px] text-center text-gray-500 hidden">Advertisement</div><div id="div-gpt-ad-infeed-13"></div></div></div><div class="jsx-ad50481d5ee26850 flex flex-col sm:flex-row justify-between my-4 "><a class="jsx-ad50481d5ee26850" href="/view/age-adjusted-index-machine-learning-are-significant-factors-for-predicting-thrombosis-in-polycythemia-vera"><img src="https://cdn.sanity.io/images/0vv8moc6/ajmc/98649e8393da456a0f9119ad89509a0d840850aa-6000x4000.jpg?fit=crop&auto=format" alt="Polycythemia vera, a rare slow-growing blood cancer with an increase in the number of red blood cells | Dr_Microbe - stock.adobe.com" width="288" class="jsx-ad50481d5ee26850 w-full xs:w-[288px] "/></a><div class="jsx-ad50481d5ee26850 article-detail flex flex-col gap-[0.2rem] w-full sm:w-[46%] md:w-[65%]"><span class="jsx-ad50481d5ee26850 font-bold article-publish-date block italic text-sm text-gray-500 mt-[1rem] sm:mt-0">December 18th 2023</span><p class="jsx-ad50481d5ee26850 article-title font-bold text-[1rem]"><a class="jsx-ad50481d5ee26850" href="/view/age-adjusted-index-machine-learning-are-significant-factors-for-predicting-thrombosis-in-polycythemia-vera">Age-Adjusted Index, Machine Learning Are Significant Factors for Predicting Thrombosis in Polycythemia Vera</a></p><div class="jsx-ad50481d5ee26850 authors flex-row wrap gap-[0.2rem]"><a class="jsx-ad50481d5ee26850 text-[#000] text-sm italic" href="/authors/pearl-steinzor">Pearl Steinzor</a></div><div class="jsx-ad50481d5ee26850 article-summary"><a class="jsx-ad50481d5ee26850" href="/view/age-adjusted-index-machine-learning-are-significant-factors-for-predicting-thrombosis-in-polycythemia-vera"><div class="jsx-ad50481d5ee26850 text-sm text-gray-500 py-1">Posters presented at the American Society of Hematology Annual Meeting and Exposition identified factors associated with reducing risk and improving survival in patients with polycythemia vera (PV).</div></a></div></div></div><div style="border-bottom:1px solid #CCCCCC" class="jsx-ad50481d5ee26850"></div></div><div class="jsx-ad50481d5ee26850 w-full h-full"><div class="jsx-ad50481d5ee26850 flex flex-col sm:flex-row justify-between my-4 "><a class="jsx-ad50481d5ee26850" href="/view/novel-bcma-directed-car-anito-cel-is-highly-effective-for-myeloma"><img src="https://cdn.sanity.io/images/0vv8moc6/ajmc/17281597511055323a9c74085f6900f3a894bbfc-425x425.webp?fit=crop&auto=format" alt="Matthew Frigault, MD, MS, Harvard Medical School, Massachusetts General Hospital Cancer Center" width="288" class="jsx-ad50481d5ee26850 w-full xs:w-[288px] "/></a><div class="jsx-ad50481d5ee26850 article-detail flex flex-col gap-[0.2rem] w-full sm:w-[46%] md:w-[65%]"><span class="jsx-ad50481d5ee26850 font-bold article-publish-date block italic text-sm text-gray-500 mt-[1rem] sm:mt-0">December 12th 2023</span><p class="jsx-ad50481d5ee26850 article-title font-bold text-[1rem]"><a class="jsx-ad50481d5ee26850" href="/view/novel-bcma-directed-car-anito-cel-is-highly-effective-for-myeloma"> Novel BCMA-Directed CAR Anito-Cel Is Highly Effective for Myeloma</a></p><div class="jsx-ad50481d5ee26850 authors flex-row wrap gap-[0.2rem]"><a class="jsx-ad50481d5ee26850 text-[#000] text-sm italic" href="/authors/silas-inman">Silas Inman</a></div><div class="jsx-ad50481d5ee26850 article-summary"><a class="jsx-ad50481d5ee26850" href="/view/novel-bcma-directed-car-anito-cel-is-highly-effective-for-myeloma"><div class="jsx-ad50481d5ee26850 text-sm text-gray-500 py-1">BCMA-directed CAR T-cell therapy anitocabtagene autoleucel demonstrated a 76% complete remission rate and 89% negative minimal residual disease in patients with relapsed/refractory multiple myeloma.</div></a></div></div></div><div style="border-bottom:1px solid #CCCCCC" class="jsx-ad50481d5ee26850"></div></div><div class="jsx-ad50481d5ee26850 w-full h-full"><div class="jsx-ad50481d5ee26850 flex flex-col sm:flex-row justify-between my-4 "><a class="jsx-ad50481d5ee26850" href="/view/exagamglogene-autotemcel-meets-end-points-in-severe-sickle-cell-disease--thalassemia"><img src="https://cdn.sanity.io/images/0vv8moc6/ajmc/b22fb8e3fced2a9901c378eee5c5e682535fb1b6-4896x3264.jpg?fit=crop&auto=format" alt="Sickle Cell Anemia 3D Illustration | Ezume Images - stock.adobe.com" width="288" class="jsx-ad50481d5ee26850 w-full xs:w-[288px] "/></a><div class="jsx-ad50481d5ee26850 article-detail flex flex-col gap-[0.2rem] w-full sm:w-[46%] md:w-[65%]"><span class="jsx-ad50481d5ee26850 font-bold article-publish-date block italic text-sm text-gray-500 mt-[1rem] sm:mt-0">December 7th 2023</span><p class="jsx-ad50481d5ee26850 article-title font-bold text-[1rem]"><a class="jsx-ad50481d5ee26850" href="/view/exagamglogene-autotemcel-meets-end-points-in-severe-sickle-cell-disease--thalassemia">Exagamglogene Autotemcel Meets End Points in Severe Sickle Cell Disease, β-Thalassemia</a></p><div class="jsx-ad50481d5ee26850 authors flex-row wrap gap-[0.2rem]"><a class="jsx-ad50481d5ee26850 text-[#000] text-sm italic" href="/authors/pearl-steinzor">Pearl Steinzor</a></div><div class="jsx-ad50481d5ee26850 article-summary"><a class="jsx-ad50481d5ee26850" href="/view/exagamglogene-autotemcel-meets-end-points-in-severe-sickle-cell-disease--thalassemia"><div class="jsx-ad50481d5ee26850 text-sm text-gray-500 py-1">Two posters set to be presented at the 65th American Society of Hematology Annual Meeting & Exposition met their primary and secondary end points regarding exagamglogene autotemcel therapy for sickle cell disease and β-thalassemia.</div></a></div></div></div><div style="border-bottom:1px solid #CCCCCC" class="jsx-ad50481d5ee26850"></div></div><div class="jsx-ad50481d5ee26850 w-full h-full"><div class="jsx-ad50481d5ee26850 flex flex-col sm:flex-row justify-between my-4 "><a class="jsx-ad50481d5ee26850" href="/view/rituximab-omalizumab-combination-therapy-well-tolerated-for-bullous-pemphigoid-patients"><img src="https://cdn.sanity.io/images/0vv8moc6/ajmc/4ad625625035ae332a4c4b9f2e0ebcf055335a7a-3903x2160.jpg?fit=crop&auto=format" alt="Young students of chemistry working in laboratory | NDABCREATIVITY - stock.adobe.com" width="288" class="jsx-ad50481d5ee26850 w-full xs:w-[288px] "/></a><div class="jsx-ad50481d5ee26850 article-detail flex flex-col gap-[0.2rem] w-full sm:w-[46%] md:w-[65%]"><span class="jsx-ad50481d5ee26850 font-bold article-publish-date block italic text-sm text-gray-500 mt-[1rem] sm:mt-0">December 6th 2023</span><p class="jsx-ad50481d5ee26850 article-title font-bold text-[1rem]"><a class="jsx-ad50481d5ee26850" href="/view/rituximab-omalizumab-combination-therapy-well-tolerated-for-bullous-pemphigoid-patients">Rituximab, Omalizumab Combination Therapy Well-Tolerated for Patients With Bullous Pemphigoid </a></p><div class="jsx-ad50481d5ee26850 authors flex-row wrap gap-[0.2rem]"><a class="jsx-ad50481d5ee26850 text-[#000] text-sm italic" href="/authors/tim-smith">Tim Smith</a></div><div class="jsx-ad50481d5ee26850 article-summary"><a class="jsx-ad50481d5ee26850" href="/view/rituximab-omalizumab-combination-therapy-well-tolerated-for-bullous-pemphigoid-patients"><div class="jsx-ad50481d5ee26850 text-sm text-gray-500 py-1">This data may bring patients with the rare immunobullous disease closer to an eventual FDA-approved treatment.</div></a></div></div></div><div style="border-bottom:1px solid #CCCCCC" class="jsx-ad50481d5ee26850"></div></div><div class="jsx-ad50481d5ee26850 w-full h-full"><div class="jsx-ad50481d5ee26850 flex md:hidden justify-center items-center"></div><div class="jsx-ad50481d5ee26850 flex flex-col sm:flex-row justify-between my-4 "><a class="jsx-ad50481d5ee26850" href="/view/odevixibat-safe-for-alagille-syndrome-based-on-hepatic-changes"><img src="https://cdn.sanity.io/images/0vv8moc6/ajmc/e85462517be89c4b0fd7424a5238f607acc64365-3803x3944.jpg?fit=crop&auto=format" alt="Odevixibat drug molecule. Skeletal formula | Image credit: molekuul.be - stock.adobe.com" width="288" class="jsx-ad50481d5ee26850 w-full xs:w-[288px] "/></a><div class="jsx-ad50481d5ee26850 article-detail flex flex-col gap-[0.2rem] w-full sm:w-[46%] md:w-[65%]"><span class="jsx-ad50481d5ee26850 font-bold article-publish-date block italic text-sm text-gray-500 mt-[1rem] sm:mt-0">November 8th 2023</span><p class="jsx-ad50481d5ee26850 article-title font-bold text-[1rem]"><a class="jsx-ad50481d5ee26850" href="/view/odevixibat-safe-for-alagille-syndrome-based-on-hepatic-changes">Odevixibat Safe for Alagille Syndrome Based on Hepatic Changes</a></p><div class="jsx-ad50481d5ee26850 authors flex-row wrap gap-[0.2rem]"><a class="jsx-ad50481d5ee26850 text-[#000] text-sm italic" href="/authors/kevin-kunzmann">Kevin Kunzmann</a></div><div class="jsx-ad50481d5ee26850 article-summary"><a class="jsx-ad50481d5ee26850" href="/view/odevixibat-safe-for-alagille-syndrome-based-on-hepatic-changes"><div class="jsx-ad50481d5ee26850 text-sm text-gray-500 py-1">Pooled phase 3 data presented at North American Society for Pediatric Gastroenterology, Hepatology & Nutrition 2023 support the benefit-risk profile of the ileal bile acid transport inhibitor in treating the rare liver disease.</div></a></div></div></div><div style="border-bottom:1px solid #CCCCCC" class="jsx-ad50481d5ee26850"></div></div><div class="jsx-ad50481d5ee26850 w-full h-full"><div class="jsx-ad50481d5ee26850 flex flex-col sm:flex-row justify-between my-4 "><a class="jsx-ad50481d5ee26850" href="/view/how-patients-and-caregivers-can-be-a-catalyst-for-rare-disease-innovation"><img src="https://cdn.sanity.io/images/0vv8moc6/ajmc/3be4aa33854a22fcb51f70e45b914e1edbb374cf-318x318.png?fit=crop&auto=format" alt="Image Credit: Philip Cyr, MPH" width="288" class="jsx-ad50481d5ee26850 w-full xs:w-[288px] "/></a><div class="jsx-ad50481d5ee26850 article-detail flex flex-col gap-[0.2rem] w-full sm:w-[46%] md:w-[65%]"><span class="jsx-ad50481d5ee26850 font-bold article-publish-date block italic text-sm text-gray-500 mt-[1rem] sm:mt-0">November 5th 2023</span><p class="jsx-ad50481d5ee26850 article-title font-bold text-[1rem]"><a class="jsx-ad50481d5ee26850" href="/view/how-patients-and-caregivers-can-be-a-catalyst-for-rare-disease-innovation">Contributor: How Patients and Caregivers Can Be a Catalyst for Rare Disease Innovation</a></p><div class="jsx-ad50481d5ee26850 authors flex-row wrap gap-[0.2rem]"><a class="jsx-ad50481d5ee26850 text-[#000] text-sm italic" href="/authors/philip-cyr-mph">Philip Cyr, MPH</a></div><div class="jsx-ad50481d5ee26850 article-summary"><a class="jsx-ad50481d5ee26850" href="/view/how-patients-and-caregivers-can-be-a-catalyst-for-rare-disease-innovation"><div class="jsx-ad50481d5ee26850 text-sm text-gray-500 py-1">Patient input and experiences play a crucial role in advancing rare disease research and therapy development, as they help define the disease, inform clinical trial design, and influence regulators and payers' decisions, ultimately serving as catalysts for innovation in the field.</div></a></div></div></div><div style="border-bottom:1px solid #CCCCCC" class="jsx-ad50481d5ee26850"></div></div><div class="jsx-ad50481d5ee26850 w-full h-full"><div><div><div class="text-[8px] text-center text-gray-500 hidden">Advertisement</div><div id="div-gpt-ad-infeed-19"></div></div></div><div class="jsx-ad50481d5ee26850 flex flex-col sm:flex-row justify-between my-4 "><a class="jsx-ad50481d5ee26850" href="/view/covid-19-is-associated-with-autoimmune-autoinflammatory-connective-tissue-disorders"><img src="https://cdn.sanity.io/images/0vv8moc6/ajmc/a47286a561b8457b0276a3eee67f8155e44b1029-5039x2977.jpg?fit=crop&auto=format" alt="Autoimmune word cloud on a white background | arloo - stock.adobe.com" width="288" class="jsx-ad50481d5ee26850 w-full xs:w-[288px] "/></a><div class="jsx-ad50481d5ee26850 article-detail flex flex-col gap-[0.2rem] w-full sm:w-[46%] md:w-[65%]"><span class="jsx-ad50481d5ee26850 font-bold article-publish-date block italic text-sm text-gray-500 mt-[1rem] sm:mt-0">November 3rd 2023</span><p class="jsx-ad50481d5ee26850 article-title font-bold text-[1rem]"><a class="jsx-ad50481d5ee26850" href="/view/covid-19-is-associated-with-autoimmune-autoinflammatory-connective-tissue-disorders">COVID-19 Associated With Autoimmune, Autoinflammatory Connective Tissue Disorders</a></p><div class="jsx-ad50481d5ee26850 authors flex-row wrap gap-[0.2rem]"><a class="jsx-ad50481d5ee26850 text-[#000] text-sm italic" href="/authors/pearl-steinzor">Pearl Steinzor</a></div><div class="jsx-ad50481d5ee26850 article-summary"><a class="jsx-ad50481d5ee26850" href="/view/covid-19-is-associated-with-autoimmune-autoinflammatory-connective-tissue-disorders"><div class="jsx-ad50481d5ee26850 text-sm text-gray-500 py-1">Researchers highlighted the potential long-term consequences of COVID-19 on incident autoimmune and autoinflammatory connective tissue disorders in a recent study. </div></a></div></div></div><div style="border-bottom:1px solid #CCCCCC" class="jsx-ad50481d5ee26850"></div></div><div class="jsx-ad50481d5ee26850 w-full h-full"><div class="jsx-ad50481d5ee26850 flex flex-col sm:flex-row justify-between my-4 "><a class="jsx-ad50481d5ee26850" href="/view/vosoritide-approved-achondroplasia-children-under-5-years-fda"><img src="https://cdn.sanity.io/images/0vv8moc6/ajmc/3f7d1e876b26f70f41917cc735443e9ac539e0e5-4500x3375.jpg?fit=crop&auto=format" alt="achondroplasia word or concept represented by wooden letter tiles on a wooden table with glasses and a book | lexiconimages - stock.adobe.com " width="288" class="jsx-ad50481d5ee26850 w-full xs:w-[288px] "/></a><div class="jsx-ad50481d5ee26850 article-detail flex flex-col gap-[0.2rem] w-full sm:w-[46%] md:w-[65%]"><span class="jsx-ad50481d5ee26850 font-bold article-publish-date block italic text-sm text-gray-500 mt-[1rem] sm:mt-0">October 29th 2023</span><p class="jsx-ad50481d5ee26850 article-title font-bold text-[1rem]"><a class="jsx-ad50481d5ee26850" href="/view/vosoritide-approved-achondroplasia-children-under-5-years-fda">Vosoritide Approved for Achondroplasia in Children Under 5 Years by FDA</a></p><div class="jsx-ad50481d5ee26850 authors flex-row wrap gap-[0.2rem]"><a class="jsx-ad50481d5ee26850 text-[#000] text-sm italic" href="/authors/connor-iapoce">Connor Iapoce</a></div><div class="jsx-ad50481d5ee26850 article-summary"><a class="jsx-ad50481d5ee26850" href="/view/vosoritide-approved-achondroplasia-children-under-5-years-fda"><div class="jsx-ad50481d5ee26850 text-sm text-gray-500 py-1">Children of all ages with achondroplasia are now included in the expanded Indication, the most common form of skeletal dysplasia leading to disproportionate short stature.</div></a></div></div></div><div style="border-bottom:1px solid #CCCCCC" class="jsx-ad50481d5ee26850"></div></div><div class="jsx-ad50481d5ee26850 w-full h-full"><div class="jsx-ad50481d5ee26850 flex flex-col sm:flex-row justify-between my-4 "><a class="jsx-ad50481d5ee26850" href="/view/serious-infections-were-rare-among-patients-with-psa-axspa"><img src="https://cdn.sanity.io/images/0vv8moc6/ajmc/12b17bef76a57004347a67589c1fcbe35392fff1-300x300.webp?fit=crop&auto=format" alt="Fabienne Coury, MD, PhD. Credit: ResearchGate" width="288" class="jsx-ad50481d5ee26850 w-full xs:w-[288px] "/></a><div class="jsx-ad50481d5ee26850 article-detail flex flex-col gap-[0.2rem] w-full sm:w-[46%] md:w-[65%]"><span class="jsx-ad50481d5ee26850 font-bold article-publish-date block italic text-sm text-gray-500 mt-[1rem] sm:mt-0">October 20th 2023</span><p class="jsx-ad50481d5ee26850 article-title font-bold text-[1rem]"><a class="jsx-ad50481d5ee26850" href="/view/serious-infections-were-rare-among-patients-with-psa-axspa">Serious Infections Were Rare Among Patients With PsA, axSpA</a></p><div class="jsx-ad50481d5ee26850 authors flex-row wrap gap-[0.2rem]"><a class="jsx-ad50481d5ee26850 text-[#000] text-sm italic" href="/authors/lana-pine">Lana Pine</a></div><div class="jsx-ad50481d5ee26850 article-summary"><a class="jsx-ad50481d5ee26850" href="/view/serious-infections-were-rare-among-patients-with-psa-axspa"><div class="jsx-ad50481d5ee26850 text-sm text-gray-500 py-1">Of the 333 patients with psoriatic arthritis (PsA) and 457 patients with axial spondyloarthritis (axSpA), there were 1.09 serious infections per 100 patient-years.</div></a></div></div></div><div style="border-bottom:1px solid #CCCCCC" class="jsx-ad50481d5ee26850"></div></div><div class="jsx-ad50481d5ee26850 w-full h-full"><div class="jsx-ad50481d5ee26850 flex flex-col sm:flex-row justify-between my-4 "><a class="jsx-ad50481d5ee26850" href="/view/advancing-the-treatment-landscape-for-patients-with-myeloproliferative-neoplasms"><img src="https://cdn.sanity.io/images/0vv8moc6/ajmc/b5a6db852f4d2366db6ae55b304f0e7133354222-5376x3584.jpg?fit=crop&auto=format" alt="Neoplasms, cancerous disease, malignant tumor | Ирина Батюк - stock.adobe.com" width="288" class="jsx-ad50481d5ee26850 w-full xs:w-[288px] "/></a><div class="jsx-ad50481d5ee26850 article-detail flex flex-col gap-[0.2rem] w-full sm:w-[46%] md:w-[65%]"><span class="jsx-ad50481d5ee26850 font-bold article-publish-date block italic text-sm text-gray-500 mt-[1rem] sm:mt-0">October 17th 2023</span><p class="jsx-ad50481d5ee26850 article-title font-bold text-[1rem]"><a class="jsx-ad50481d5ee26850" href="/view/advancing-the-treatment-landscape-for-patients-with-myeloproliferative-neoplasms">Advancing the Treatment Landscape for Patients With Myeloproliferative Neoplasms</a></p><div class="jsx-ad50481d5ee26850 authors flex-row wrap gap-[0.2rem]"><a class="jsx-ad50481d5ee26850 text-[#000] text-sm italic" href="/authors/pearl-steinzor">Pearl Steinzor</a></div><div class="jsx-ad50481d5ee26850 article-summary"><a class="jsx-ad50481d5ee26850" href="/view/advancing-the-treatment-landscape-for-patients-with-myeloproliferative-neoplasms"><div class="jsx-ad50481d5ee26850 text-sm text-gray-500 py-1">This group of cancers remains a challenge to diagnose, can be rapidly progressive, and requires complex treatment and follow-up care, research suggests. </div></a></div></div></div><div style="border-bottom:1px solid #CCCCCC" class="jsx-ad50481d5ee26850"></div></div><div class="jsx-ad50481d5ee26850 w-full h-full"><div class="jsx-ad50481d5ee26850 flex flex-col sm:flex-row justify-between my-4 "><a class="jsx-ad50481d5ee26850" href="/view/daily-oral-paltusotine-maintains-acromegaly-treatment-benefit-in-phase-3-trial"><img src="https://cdn.sanity.io/images/0vv8moc6/ajmc/da0f0716957387460b25c957b290fc7fe0c2b507-2545x1697.jpg?fit=crop&auto=format" alt="Drugs for Acromegaly treatment, abnormal growth hormone disease | Image credit: jarun011 - stock.adobe.com" width="288" class="jsx-ad50481d5ee26850 w-full xs:w-[288px] "/></a><div class="jsx-ad50481d5ee26850 article-detail flex flex-col gap-[0.2rem] w-full sm:w-[46%] md:w-[65%]"><span class="jsx-ad50481d5ee26850 font-bold article-publish-date block italic text-sm text-gray-500 mt-[1rem] sm:mt-0">October 14th 2023</span><p class="jsx-ad50481d5ee26850 article-title font-bold text-[1rem]"><a class="jsx-ad50481d5ee26850" href="/view/daily-oral-paltusotine-maintains-acromegaly-treatment-benefit-in-phase-3-trial">Daily Oral Paltusotine Maintains Acromegaly Treatment Benefit in Phase 3 Trial</a></p><div class="jsx-ad50481d5ee26850 authors flex-row wrap gap-[0.2rem]"><a class="jsx-ad50481d5ee26850 text-[#000] text-sm italic" href="/authors/kevin-kunzmann">Kevin Kunzmann</a></div><div class="jsx-ad50481d5ee26850 article-summary"><a class="jsx-ad50481d5ee26850" href="/view/daily-oral-paltusotine-maintains-acromegaly-treatment-benefit-in-phase-3-trial"><div class="jsx-ad50481d5ee26850 text-sm text-gray-500 py-1">Crinetics announced findings from the PATHFNDR-1 trial showing the investigative oral daily drug may provide patients with the rare disease an alternative from recurring injection therapy.</div></a></div></div></div><div style="border-bottom:1px solid #CCCCCC" class="jsx-ad50481d5ee26850"></div></div><div class="jsx-ad50481d5ee26850 w-full h-full"><div class="jsx-ad50481d5ee26850 flex flex-col sm:flex-row justify-between my-4 "><a class="jsx-ad50481d5ee26850" href="/view/dr-ruben-mesa-discusses-balancing-treatment-access-cost-effectiveness-for-patients-with-rare-cancers"><img src="https://cdn.sanity.io/images/0vv8moc6/ajmc/08007dde6072d927f3c7d0da74272332b27cf9e2-2863x1536.png?fit=crop&auto=format" alt="Ruben A. Mesa, MD, FACP, president and executive director of Atrium Health Levine Cancer Institute (LCI) and Atrium Health Wake Forest Baptist Comprehensive Cancer Center" width="288" class="jsx-ad50481d5ee26850 w-full xs:w-[288px] "/></a><div class="jsx-ad50481d5ee26850 article-detail flex flex-col gap-[0.2rem] w-full sm:w-[46%] md:w-[65%]"><span class="jsx-ad50481d5ee26850 font-bold article-publish-date block italic text-sm text-gray-500 mt-[1rem] sm:mt-0">October 11th 2023</span><p class="jsx-ad50481d5ee26850 article-title font-bold text-[1rem]"><a class="jsx-ad50481d5ee26850" href="/view/dr-ruben-mesa-discusses-balancing-treatment-access-cost-effectiveness-for-patients-with-rare-cancers">Dr Ruben Mesa Discusses Balancing Treatment Access, Cost-Effectiveness for Patients With Rare Cancers</a></p><div class="jsx-ad50481d5ee26850 authors flex-row wrap gap-[0.2rem]"><a class="jsx-ad50481d5ee26850 text-[#000] text-sm italic" href="/authors/pearl-steinzor">Pearl Steinzor</a></div><div class="jsx-ad50481d5ee26850 article-summary"><a class="jsx-ad50481d5ee26850" href="/view/dr-ruben-mesa-discusses-balancing-treatment-access-cost-effectiveness-for-patients-with-rare-cancers"><div class="jsx-ad50481d5ee26850 text-sm text-gray-500 py-1">Ruben A. Mesa, MD, FACP, president and executive director of Atrium Health Levine Cancer Institute (LCI) and Atrium Health Wake Forest Baptist Comprehensive Cancer Center, discusses how practices can improve access and affordability to treatments for rare cancers, such as myeloproliferative neoplasms. </div></a></div></div></div><div style="border-bottom:1px solid #CCCCCC" class="jsx-ad50481d5ee26850"></div></div><div class="jsx-ad50481d5ee26850 w-full h-full"><div><div><div class="text-[8px] text-center text-gray-500 hidden">Advertisement</div><div id="div-gpt-ad-infeed-25"></div></div></div><div class="jsx-ad50481d5ee26850 flex md:hidden justify-center items-center"></div><div class="jsx-ad50481d5ee26850 flex flex-col sm:flex-row justify-between my-4 "><a class="jsx-ad50481d5ee26850" href="/view/fda-approves-nedosiran-injection-for-children-and-adults-with-ph1"><img src="https://cdn.sanity.io/images/0vv8moc6/ajmc/d63f4bde8301dc1d6fc4fdf99a64851dde8cad36-6000x4000.jpg?fit=crop&auto=format" alt="Vials of liquid on a white table and the logo of a large pharmaceutical company | Image credit: diy13 - stock.adobe.com" width="288" class="jsx-ad50481d5ee26850 w-full xs:w-[288px] "/></a><div class="jsx-ad50481d5ee26850 article-detail flex flex-col gap-[0.2rem] w-full sm:w-[46%] md:w-[65%]"><span class="jsx-ad50481d5ee26850 font-bold article-publish-date block italic text-sm text-gray-500 mt-[1rem] sm:mt-0">October 2nd 2023</span><p class="jsx-ad50481d5ee26850 article-title font-bold text-[1rem]"><a class="jsx-ad50481d5ee26850" href="/view/fda-approves-nedosiran-injection-for-children-and-adults-with-ph1">FDA Approves Nedosiran Injection for Children and Adults With PH1</a></p><div class="jsx-ad50481d5ee26850 authors flex-row wrap gap-[0.2rem]"><a class="jsx-ad50481d5ee26850 text-[#000] text-sm italic" href="/authors/pearl-steinzor">Pearl Steinzor</a></div><div class="jsx-ad50481d5ee26850 article-summary"><a class="jsx-ad50481d5ee26850" href="/view/fda-approves-nedosiran-injection-for-children-and-adults-with-ph1"><div class="jsx-ad50481d5ee26850 text-sm text-gray-500 py-1">Nedosiran (Rivfloza) was approved for children and adults with primary hyperoxaluria type 1 (PH1), according to drugmaker Novo Nordisk. </div></a></div></div></div><div style="border-bottom:1px solid #CCCCCC" class="jsx-ad50481d5ee26850"></div></div><div class="jsx-ad50481d5ee26850 w-full h-full"><div class="jsx-ad50481d5ee26850 flex flex-col sm:flex-row justify-between my-4 "><a class="jsx-ad50481d5ee26850" href="/view/antiseizure-therapy-fenfluramine-continues-to-show-pronounced-benefits-in-rare-developmental-epilepsies"><img src="https://cdn.sanity.io/images/0vv8moc6/ajmc/c2e62b1647dfc697dc64c421bffad3a022f323f0-300x300.webp?fit=crop&auto=format" alt="Orrin Devinsky, MD, director of New York University Langone Health’s Comprehensive Epilepsy Center" width="288" class="jsx-ad50481d5ee26850 w-full xs:w-[288px] "/></a><div class="jsx-ad50481d5ee26850 article-detail flex flex-col gap-[0.2rem] w-full sm:w-[46%] md:w-[65%]"><span class="jsx-ad50481d5ee26850 font-bold article-publish-date block italic text-sm text-gray-500 mt-[1rem] sm:mt-0">September 28th 2023</span><p class="jsx-ad50481d5ee26850 article-title font-bold text-[1rem]"><a class="jsx-ad50481d5ee26850" href="/view/antiseizure-therapy-fenfluramine-continues-to-show-pronounced-benefits-in-rare-developmental-epilepsies">Antiseizure Therapy Fenfluramine Continues to Show Pronounced Benefits in Rare, Developmental Epilepsies</a></p><div class="jsx-ad50481d5ee26850 authors flex-row wrap gap-[0.2rem]"><a class="jsx-ad50481d5ee26850 text-[#000] text-sm italic" href="/authors/marco-meglio">Marco Meglio</a></div><div class="jsx-ad50481d5ee26850 article-summary"><a class="jsx-ad50481d5ee26850" href="/view/antiseizure-therapy-fenfluramine-continues-to-show-pronounced-benefits-in-rare-developmental-epilepsies"><div class="jsx-ad50481d5ee26850 text-sm text-gray-500 py-1">One meta-analysis featuring 8 studies showed that more than half of patients reported a 100% reduction in their generalized tonic-clonic seizures or tonic-clonic seizures.</div></a></div></div></div><div style="border-bottom:1px solid #CCCCCC" class="jsx-ad50481d5ee26850"></div></div><div class="jsx-ad50481d5ee26850 w-full h-full"><div class="jsx-ad50481d5ee26850 flex flex-col sm:flex-row justify-between my-4 "><a class="jsx-ad50481d5ee26850" href="/view/dr-ryan-haumschild-discusses-payer-provider-perspectives-on-prior-authorization-in-rare-diseases"><img src="https://cdn.sanity.io/images/0vv8moc6/ajmc/f9f702d275498d4412f87a52da9b68a419ce2e51-2049x1384.png?fit=crop&auto=format" alt="Ryan Haumschild, PharmD, MS, MBA, director of pharmacy, Emory Winship Cancer Institute" width="288" class="jsx-ad50481d5ee26850 w-full xs:w-[288px] "/></a><div class="jsx-ad50481d5ee26850 article-detail flex flex-col gap-[0.2rem] w-full sm:w-[46%] md:w-[65%]"><span class="jsx-ad50481d5ee26850 font-bold article-publish-date block italic text-sm text-gray-500 mt-[1rem] sm:mt-0">September 19th 2023</span><p class="jsx-ad50481d5ee26850 article-title font-bold text-[1rem]"><a class="jsx-ad50481d5ee26850" href="/view/dr-ryan-haumschild-discusses-payer-provider-perspectives-on-prior-authorization-in-rare-diseases">Dr Ryan Haumschild Discusses Payer, Provider Perspectives on Prior Authorization in Rare Diseases</a></p><div class="jsx-ad50481d5ee26850 authors flex-row wrap gap-[0.2rem]"><a class="jsx-ad50481d5ee26850 text-[#000] text-sm italic" href="/authors/pearl-steinzor">Pearl Steinzor</a></div><div class="jsx-ad50481d5ee26850 article-summary"><a class="jsx-ad50481d5ee26850" href="/view/dr-ryan-haumschild-discusses-payer-provider-perspectives-on-prior-authorization-in-rare-diseases"><div class="jsx-ad50481d5ee26850 text-sm text-gray-500 py-1">Ryan Haumschild, PharmD, MS, MBA, director of pharmacy at Emory Winship Cancer Institute, shares his unique perspectives as both a provider and payer on the use of prior authorizations (PAs) and "Gold Cards" in patients with rare diseases. </div></a></div></div></div><div style="border-bottom:1px solid #CCCCCC" class="jsx-ad50481d5ee26850"></div></div><div class="jsx-ad50481d5ee26850 w-full h-full"><div class="jsx-ad50481d5ee26850 flex flex-col sm:flex-row justify-between my-4 "><a class="jsx-ad50481d5ee26850" href="/view/late-stage-trial-in-chronic-hepatitis-d-discontinued-due-to-safety-concerns"><img src="https://cdn.sanity.io/images/0vv8moc6/ajmc/6363baa8244a4d6af76ff16ac9bb881f12258200-3136x2351.jpg?fit=crop&auto=format" alt="Chronic hepatitis delta | Image credit: jarun011 - stock.adobe.com" width="288" class="jsx-ad50481d5ee26850 w-full xs:w-[288px] "/></a><div class="jsx-ad50481d5ee26850 article-detail flex flex-col gap-[0.2rem] w-full sm:w-[46%] md:w-[65%]"><span class="jsx-ad50481d5ee26850 font-bold article-publish-date block italic text-sm text-gray-500 mt-[1rem] sm:mt-0">September 15th 2023</span><p class="jsx-ad50481d5ee26850 article-title font-bold text-[1rem]"><a class="jsx-ad50481d5ee26850" href="/view/late-stage-trial-in-chronic-hepatitis-d-discontinued-due-to-safety-concerns">Late-Stage Trial in Chronic Hepatitis D Discontinued Due to Safety Concerns</a></p><div class="jsx-ad50481d5ee26850 authors flex-row wrap gap-[0.2rem]"><a class="jsx-ad50481d5ee26850 text-[#000] text-sm italic" href="/authors/alicia-bigica">Alicia Bigica</a></div><div class="jsx-ad50481d5ee26850 article-summary"><a class="jsx-ad50481d5ee26850" href="/view/late-stage-trial-in-chronic-hepatitis-d-discontinued-due-to-safety-concerns"><div class="jsx-ad50481d5ee26850 text-sm text-gray-500 py-1">Several trial participants experienced concerning hepatobiliary events.</div></a></div></div></div><div style="border-bottom:1px solid #CCCCCC" class="jsx-ad50481d5ee26850"></div></div><div class="jsx-ad50481d5ee26850 w-full h-full"><div class="jsx-ad50481d5ee26850 flex flex-col sm:flex-row justify-between my-4 "><a class="jsx-ad50481d5ee26850" href="/view/dr-ryan-haumschild-discusses-treatment-challenges-for-patients-with-rare-diseases-and-their-pharmacists"><img src="https://cdn.sanity.io/images/0vv8moc6/ajmc/f9f702d275498d4412f87a52da9b68a419ce2e51-2049x1384.png?fit=crop&auto=format" alt="Ryan Haumschild, PharmD, MS, MBA, director of pharmacy, Emory Winship Cancer Institute" width="288" class="jsx-ad50481d5ee26850 w-full xs:w-[288px] "/></a><div class="jsx-ad50481d5ee26850 article-detail flex flex-col gap-[0.2rem] w-full sm:w-[46%] md:w-[65%]"><span class="jsx-ad50481d5ee26850 font-bold article-publish-date block italic text-sm text-gray-500 mt-[1rem] sm:mt-0">September 12th 2023</span><p class="jsx-ad50481d5ee26850 article-title font-bold text-[1rem]"><a class="jsx-ad50481d5ee26850" href="/view/dr-ryan-haumschild-discusses-treatment-challenges-for-patients-with-rare-diseases-and-their-pharmacists">Dr Ryan Haumschild Discusses Treatment Challenges for Patients With Rare Diseases and Their Pharmacists</a></p><div class="jsx-ad50481d5ee26850 authors flex-row wrap gap-[0.2rem]"><a class="jsx-ad50481d5ee26850 text-[#000] text-sm italic" href="/authors/pearl-steinzor">Pearl Steinzor</a></div><div class="jsx-ad50481d5ee26850 article-summary"><a class="jsx-ad50481d5ee26850" href="/view/dr-ryan-haumschild-discusses-treatment-challenges-for-patients-with-rare-diseases-and-their-pharmacists"><div class="jsx-ad50481d5ee26850 text-sm text-gray-500 py-1">Ryan Haumschild, PharmD, MS, MBA, director of pharmacy at Emory Winship Cancer Institute, discusses treatment options available to patients with rare diseases, as well as the challenges these patients and their pharmacists face in accessing these treatments. </div></a></div></div></div><div style="border-bottom:1px solid #CCCCCC" class="jsx-ad50481d5ee26850"></div></div><div class="jsx-ad50481d5ee26850 w-full h-full"><div class="jsx-ad50481d5ee26850 flex flex-col sm:flex-row justify-between my-4 "><a class="jsx-ad50481d5ee26850" href="/view/reviewing-2022-advances-in-childhood-interstitial-lung-disease-and-non-cf-bronchiectasis"><img src="https://cdn.sanity.io/images/0vv8moc6/ajmc/7273bdfa41e439fafd35ed4fc36a499c2b331115-265x270.webp?fit=crop&auto=format" alt="Andrew Barber, MD Department of Pediatrics, Virginia Commonwealth University," width="288" class="jsx-ad50481d5ee26850 w-full xs:w-[288px] "/></a><div class="jsx-ad50481d5ee26850 article-detail flex flex-col gap-[0.2rem] w-full sm:w-[46%] md:w-[65%]"><span class="jsx-ad50481d5ee26850 font-bold article-publish-date block italic text-sm text-gray-500 mt-[1rem] sm:mt-0">September 8th 2023</span><p class="jsx-ad50481d5ee26850 article-title font-bold text-[1rem]"><a class="jsx-ad50481d5ee26850" href="/view/reviewing-2022-advances-in-childhood-interstitial-lung-disease-and-non-cf-bronchiectasis">Reviewing 2022 Advances in Childhood Interstitial Lung Disease and Non-CF Bronchiectasis</a></p><div class="jsx-ad50481d5ee26850 authors flex-row wrap gap-[0.2rem]"><a class="jsx-ad50481d5ee26850 text-[#000] text-sm italic" href="/authors/giuliana-grossi">Giuliana Grossi</a></div><div class="jsx-ad50481d5ee26850 article-summary"><a class="jsx-ad50481d5ee26850" href="/view/reviewing-2022-advances-in-childhood-interstitial-lung-disease-and-non-cf-bronchiectasis"><div class="jsx-ad50481d5ee26850 text-sm text-gray-500 py-1">A year of research emphasizes the significance of collaboration, standardized approaches, and targeted therapies in rare pulmonary diseases.</div></a></div></div></div><div style="border-bottom:1px solid #CCCCCC" class="jsx-ad50481d5ee26850"></div></div></div><div class="w-full text-center flex justify-center pb-24"><a class="px-4 py-2 border-y border-r bg-primary text-white" href="/compendium/raredisease?page=1">1</a><a class="px-4 py-2 border-y border-r " href="/compendium/raredisease?page=2">2</a><a class="px-4 py-2 border-y border-r " href="/compendium/raredisease?page=3">3</a><a class="px-4 py-2 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She discussed the crucial need to improve health literacy, provide case management, and offer resources for education, housing, and social security disability to overcome these barriers and ensure patients receive comprehensive support.","_key":"b70f7db2ba66"}],"_type":"block"},{"markDefs":[],"children":[{"marks":[],"text":"","_key":"cb0a0cb040e00","_type":"span"}],"_type":"block","style":"normal","_key":"f9e6baed4361"},{"children":[{"_type":"span","marks":["em"],"text":"This transcript has been lightly edited for clarity","_key":"92bfa63194df0"}],"_type":"block","style":"normal","_key":"20bb0e2c1b5e","markDefs":[]},{"style":"normal","_key":"c290ac479f7f","markDefs":[],"children":[{"_type":"span","marks":[],"text":"","_key":"ccc3cbadf11b0"}],"_type":"block"},{"style":"normal","_key":"0439fd89f49d","markDefs":[],"children":[{"_type":"span","marks":["strong","underline"],"text":"Transcript","_key":"a5bfce2617820"}],"_type":"block"},{"_type":"block","style":"normal","_key":"8df3d2aa0323","markDefs":[],"children":[{"_type":"span","marks":[],"text":"","_key":"5cd7a3054d2b0"}]},{"markDefs":[],"children":[{"_type":"span","marks":["strong"],"text":"In your perspective, why is it important to focus on health equity, particularly among patients with rare and chronic diseases?","_key":"829f3beb1ba20"}],"_type":"block","style":"normal","_key":"bee1d9bd4673"},{"_type":"block","style":"normal","_key":"a69bce7a19f3","markDefs":[],"children":[{"_type":"span","marks":[],"text":"","_key":"225717fac93b0"}]},{"_type":"block","style":"normal","_key":"96c558673ce4","markDefs":[],"children":[{"text":"That’s a big question. When we think about health equity, I think we have to talk about several things. Number one, and it’s really looking into, not only the social factors that impact health but also the economic factors that impact health equity. There are many historical and even current items that really play a factor in how individuals are seeking care and how they're able to get the care they need. And for individuals with rare and chronic conditions, we're talking about it being a little more difficult.","_key":"00a48ec8f2e20","_type":"span","marks":[]}]},{"_type":"block","style":"normal","_key":"acf3e513d100","markDefs":[],"children":[{"_key":"14861ee262490","_type":"span","marks":[],"text":""}]},{"style":"normal","_key":"3c3336ac391f","markDefs":[],"children":[{"_type":"span","marks":[],"text":"When we think about the amount of debt that Americans have in health care, it's about $220 billion—that's a lot of money that they're spending on health care. About 3 million people in America have $10,000, at least, in medical debt per person. So, when we talk about health equity and the amount of money that they're spending, and the ability to access quality care—and that's the keyword: quality—it's difficult. Our job as an organization is really to assist them in getting the care that they need.","_key":"57c60960b0d90"}],"_type":"block"},{"_type":"block","style":"normal","_key":"e508abf7c1c9","markDefs":[],"children":[{"_type":"span","marks":[],"text":"","_key":"6cd883c272c40"}]},{"markDefs":[],"children":[{"_type":"span","marks":["strong"],"text":"While financial burden is a key contributor to health inequity, what resources are available to address the non-financial contributors?","_key":"013d593ad0ad0"}],"_type":"block","style":"normal","_key":"b9e2773f5238"},{"_key":"fb97fbc6659d","markDefs":[],"children":[{"_type":"span","marks":[],"text":"","_key":"8ad9dc53d7fa0"}],"_type":"block","style":"normal"},{"_type":"block","style":"normal","_key":"6225b5f1b6a1","markDefs":[],"children":[{"marks":[],"text":"That's really where we talk about those social determinants of health and whether people have access to education. When we are thinking about where they're living, is it a healthy environment, and the safety of neighborhoods? Then, from an organizational perspective, we look at health literacy, and making health care decisions. If you don't necessarily understand what the physician is saying, then you're less likely to make an informed decision. We focus on whether they understand the terms of their health insurance. “What is the out-of-pocket limit? What is an in-network physician, or in-network service versus out-of-network?” If you understand, kind of, the “ABCs of health care,” you’re more likely to make better decisions for health.","_key":"1010820861740","_type":"span"}]},{"_key":"b5ab5e8a3a13","markDefs":[],"children":[{"_key":"1b77953934580","_type":"span","marks":[],"text":""}],"_type":"block","style":"normal"},{"markDefs":[],"children":[{"marks":[],"text":"We also offer case management and that is important for people who are trying to really navigate the health care system. They may not understand what the benefits are that are available to them. They're looking at health insurance plans, as well as understanding their benefits when they already have the insurance. “I have this health insurance plan now, what is it that I can do? How can I reach my physician? What am I going to pay?” And then there is a service that we also provide in looking at social security disability and helping people understand what is available to them. So, looking at some of the health literacy items, but also taking some really deep looks into what is available to those individuals from a food perspective, from a housing perspective, and educational.","_key":"6661277ea8bc0","_type":"span"}],"_type":"block","style":"normal","_key":"55ebdb26fdb3"}],"link":"/view/tiara-green-calls-for-comprehensive-support-for-rare-and-chronic-diseases","_type":"article","is_visible":true,"source":null,"summary":"Health care inequity is costing the United States billions of dollars without providing quality outcomes for patients with rare and chronic diseases, Tiara Green, MSEd, president of Accessia Health, tells The American Journal of Managed Care.","seoTag":["rare disease","health equity","chronic disease","health care 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potential implications of your findings and how might the identification of specific patient characteristics or disease features and mortality inform future approaches to managing patients with ISM?","_key":"7bfd509a94ea0"}],"_type":"block","style":"normal","_key":"f63cba078d7d"},{"markDefs":[],"children":[{"_type":"span","marks":[],"text":"","_key":"8a431e4b1a1c0"}],"_type":"block","style":"normal","_key":"2e79930e169f"},{"style":"normal","_key":"37185445612f","markDefs":[],"children":[{"_type":"span","marks":[],"text":"I think these results are definitely eye opening and should be factored in for any clinical practitioner managing systemic mastocytosis patients in daily clinical practice. This is probably the first and the largest population-level data on survival in ISM in the US, and it is clearly telling us that the [ISM] diagnostic entity is not a homogeneous entity. In fact, it has a wide phenotypic spectrum, with certain patients at a higher risk of progression to advanced disease and with higher mortality. And we also know from our prior work that not all patients [with ISM] behave the same way. There is a certain subset of patients who have a pretty high symptom burden compared to those with a lower symptom burden. I think the focus is to be aware when counseling these patients that not all patients [with ISM] are the same. Specifically, that not all of them are going to have a clinically indolent course, meaning they will not have an asymptomatic or minimally symptomatic disease lasting for a decade or so. Some of them will definitely be progressed to advance disease sooner rather than later and the overall mortality, irrespective of whether you have evidence of disease progression or not, is definitely inferior compared to the general population.","_key":"0bb2f8ea775d0"}],"_type":"block"},{"style":"normal","_key":"47bd5de959ac","markDefs":[],"children":[{"_key":"b9ace000695b0","_type":"span","marks":[],"text":""}],"_type":"block"},{"style":"normal","_key":"5ca3a101af13","markDefs":[],"children":[{"_type":"span","marks":[],"text":"So, having that awareness is important, because that should factor in how frequently and closely they need to be monitored. And second, we need to find out what there are the biological or are there any genomic underlying causes that can explain why some progress faster and some progress at a slower rate. So, I think a much more in-depth, genomic understanding of these subset of patients [with ISM] who progress faster or have higher mortality needs to be done. 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Therefore, having a better understanding of survival outcomes among these patients can lead to timely treatment interventions and potentially improved outcomes. ","_key":"bec4341dd7540"}]},{"style":"normal","_key":"ef6c0b70feee","markDefs":[],"children":[{"_type":"span","marks":[],"text":"","_key":"7159650bcb7f"}],"_type":"block"},{"style":"normal","_key":"b4bcce2bd48e","markDefs":[{"href":"https://www.sciencedirect.com/science/article/pii/S0006497123046797","_key":"01176957003e","nofollow":true,"blank":true,"_type":"link"}],"children":[{"_key":"cafb855eeb0e","_type":"span","marks":[],"text":"The data found in this "},{"text":"population-level analysis","_key":"47a62dde16aa","_type":"span","marks":["01176957003e"]},{"marks":[],"text":" suggest that perhaps not all patients with ISM are truly indolent, says Sudipto Mukherjee, MD, PhD, MPH, hematology and medical oncology at Cleveland Clinic. 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As per the WHO [World Health Organization] classification, indolent systemic mastocytosis is one of the entities under the umbrella of systemic mastocytosis. As the name \"indolent\" suggests, it gives us a perception that these diseases are indolent, which means they may remain quiet for a long time without causing any kind of difficulties or symptomatic problems to the patients. The reason why we conducted this large population-based study from the US is there has been a spade of studies recently that have shown that compared to the previously held notion that patients with indolent systemic mastocytosis have an indolent course, recent studies suggest that may not be the case.","_key":"338f85a41e640"}],"_type":"block","style":"normal"},{"_type":"block","style":"normal","_key":"02c998bef74e","markDefs":[],"children":[{"_type":"span","marks":[],"text":"","_key":"2b9c64cf64070"}]},{"_type":"block","style":"normal","_key":"7548bfb7e12a","markDefs":[{"_type":"link","href":"https://www.thelancet.com/journals/lanhae/article/PIIS2352-3026(19)30166-8/fulltext","_key":"05abda2741ec","nofollow":true,"blank":true}],"children":[{"_type":"span","marks":[],"text":"For example, in 2019, a paper published in ","_key":"c4d49363bfe90"},{"_type":"span","marks":["em","05abda2741ec"],"text":"Lancet Haematology","_key":"c4d49363bfe91"},{"_type":"span","marks":[],"text":" looked at 1006 indolent systemic mastocytosis patients. This was from the European Cutaneous Mastocytosis Network registry that showed when these 1000 patients with ISM were compared to patients with cutaneous mastocytosis, their survival was diminished. More recently, a population-level study from the Danish National Health Registry included close to about 400 ISM patients, and this was compared to a non-ISM–matched cohort, which showed that the mortality was increased in patients with ISM, with a hazard ratio that fluctuated between 1.53 and 2.59, with a median follow-up of 9 years.","_key":"c4d49363bfe92"}]},{"_key":"df2ad4ef8e28","markDefs":[],"children":[{"marks":[],"text":"","_key":"ba5711a39e5a0","_type":"span"}],"_type":"block","style":"normal"},{"markDefs":[],"children":[{"_key":"a34f4a0c30eb0","_type":"span","marks":[],"text":"These data are provocative and troubling, and it does challenge our perception and notion that maybe not all ISM patients need to be considered indolent. There might be some among these who are progressing at a faster rate and therefore need to be clinically monitored and started on appropriate therapies."}],"_type":"block","style":"normal","_key":"2ec90381b6fb"},{"markDefs":[],"children":[{"text":"","_key":"203f06a40f870","_type":"span","marks":[]}],"_type":"block","style":"normal","_key":"294643bad9e8"},{"children":[{"_type":"span","marks":[],"text":"This led us to look at the outcome or the survival of the ISM patients, particularly in the US, because there have not been any significant, large scale population-level studies on systemic mastocytosis from the US. 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","ExcludeFromPubMedXML":false,"published":"2023-12-04T15:47:00.000Z","body":[{"disableAutoPlayVideo":false,"source":"brightcove","_key":"d6563ec00927","videoObject":{"_type":"videoDetails","videoTitle":"Dr Ruben Mesa on Diversity and Inclusion in Clinical Trials for Rare Diseases","thumbnail":{"_type":"image","asset":{"_ref":"image-08007dde6072d927f3c7d0da74272332b27cf9e2-2863x1536-png","_type":"reference"}},"videoDuration":"3 minute 25 seconds","videoDescription":"Dr Ruben Mesa on Diversity and Inclusion in Clinical Trials for Rare Diseases"},"_type":"video","videoID":"6342341954112"},{"markDefs":[{"href":"https://www.ajmc.com/compendium/raredisease","_key":"e8d4a8001c6b","nofollow":false,"blank":true,"_type":"link"}],"children":[{"_type":"span","marks":[],"text":"It can be particularly difficult to include a diverse group of patients in clinical trials for ","_key":"1ec4d6b86c13"},{"_type":"span","marks":["e8d4a8001c6b"],"text":"rare diseases","_key":"ba6c32579591"},{"_type":"span","marks":[],"text":", but doing so is important to ensure that treatments are effective and safe across populations. ","_key":"6204d85356b0"}],"_type":"block","style":"normal","_key":"a97e0e3afb24"},{"markDefs":[{"href":"https://atriumhealth.org/locations/detail/levine-cancer-institute-morehead","_key":"cc37d77dea80","nofollow":true,"blank":true,"_type":"link"}],"children":[{"_type":"span","marks":[],"text":"In many situations, clinicians need to fill gaps when enrolling patients with rare diseases in clinical trials, says Ruben A. Mesa, MD, president and executive director of ","_key":"18d7c2521c64"},{"_type":"span","marks":["cc37d77dea80"],"text":"Atrium Health Levine Cancer Institute","_key":"9a5d28a46ac6"},{"_type":"span","marks":[],"text":" and Atrium Health Wake Forest Baptist Comprehensive Cancer Center. 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There have been clear examples in the past where trust was violated, as it related to the conduct of clinical research. So in many ways, we start in a hole with many populations and try to work past that; build trust in areas of prevention and screening. Of course, with clinical trials, it is crucial. ","_key":"b190c5da66e50","_type":"span","marks":[]}],"_type":"block","style":"normal","_key":"cb0ccc7613d5","markDefs":[]},{"_key":"5e0f6b0ba7db","markDefs":[],"children":[{"_key":"0991a0edcbb1","_type":"span","marks":[],"text":"Second, the clinical trials have to be feasible. I sit on many different national discussions around these issues and the more visits and the more complex it is to participate, and the more individuals have to travel a distance to participate, the greater the burden becomes, the less likely it is that people will participate. So much included in terms of the design of the study, as well as whether it's a centralized or decentralized trial, and even the eligibility criteria sometimes can be inadvertently exclusionary by penalizing populations where we see higher rates of baseline increases in liver function tests, or mild renal insufficiency. Trying to limit eligibility criteria to those issues that are truly most important is crucial."}],"_type":"block","style":"normal"},{"_key":"2438c510cf97","markDefs":[],"children":[{"marks":[],"text":"","_key":"614cf1f4903d","_type":"span"}],"_type":"block","style":"normal"},{"_type":"block","style":"normal","_key":"5a37894f5066","markDefs":[],"children":[{"marks":["strong"],"text":"As health care systems continue to merge and expand, how do you envision the role of multidisciplinary care teams and collaboration in delivering value-based cancer care at Atrium Health?","_key":"b5e8cbe4284b0","_type":"span"}]},{"markDefs":[],"children":[{"_type":"span","marks":[],"text":"Multidisciplinary care and interprofessional care is really essential. If we take prostate cancer for an example, again, there are multiple options, sometimes for certain prostate cancer patients between radiation therapy, or surgery, or even observation. 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The first is that if a patient has a neuromuscular diagnosis, assume that they need the support that the clinician ordered. And then the insurance companies can follow up and audit that, but when the opening bid is to deny, that really puts us back several steps. So I think that the opening bid for these patients needs to be approval, not deny, it can be approve and verify, as opposed to deny and appeal.\n","_key":"7ffaf331d8370"}]},{"_type":"block","style":"normal","_key":"79b699b09cc0","markDefs":[],"children":[{"_key":"8cb6c91dde3d0","_type":"span","marks":[],"text":"So really, what's happening is this, the time crunch is thrown completely on the patient—the patient's doing poorly, by the way, and they don't have time—as opposed to the insurance company owning the time component of this. I think the humanistic side of this is completely underappreciated by the insurance companies. I have had a few verbal appeals, where I've been able to talk to somebody on the phone. I've had—my opinion only—relatively unprofessional discussions that I just think communicate the insurance industry's lack of appreciation. It doesn't matter if I've spoken with the pulmonary physician or any other physician who is in their appeals channel. It's, relatively speaking, the backhand. And it's super frustrating, if I'm going to take 15 minutes to an hour to appeal something, and make a phone call and wait and wait and be on hold and then finally talk to somebody, I would expect professional behavior, which is just not always there.\n"}]},{"markDefs":[],"children":[{"marks":[],"text":"It's an important topic because I feel that this vulnerable patient population, the ALS patients, are in the line of fire for purely financial reasons. And I think that there's such a great opportunity to improve their quality of life, even just a little bit, for somebody who has a pretty short timeline. 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"},"_type":"video"},{"markDefs":[{"_key":"491ffa528721","nofollow":true,"blank":true,"_type":"link","href":"https://atriumhealth.org/locations/detail/levine-cancer-institute-morehead"},{"nofollow":false,"blank":true,"_type":"link","href":"https://www.ajmc.com/compendium/raredisease","_key":"a484b7cb5dbb"}],"children":[{"_type":"span","marks":[],"text":"Significant gaps exist within cancer care, especially among patients living in rural areas or patients belonging to minority populations who have ","_key":"ff8fd950fdca"},{"_type":"span","marks":["a484b7cb5dbb"],"text":"rare ","_key":"5f22f5a35e81"},{"_key":"bee2c765e5b4","_type":"span","marks":[],"text":"types of cancers. "},{"marks":["491ffa528721"],"text":"Atrium Health Levine Cancer Institute","_key":"985c51853a08","_type":"span"},{"_type":"span","marks":[],"text":" (LCI) is a comprehensive cancer center with a strong focus on delivering care to underserved or underrepresented patients to improve value-based care. ","_key":"ba776b7fa681"}],"_type":"block","style":"normal","_key":"6f08769a6a5d"},{"markDefs":[],"children":[{"_key":"cd5cc7fee3da","_type":"span","marks":[],"text":"Prompt access to care and building patient engagement and trust are the main drivers for expanding and improving care, says Ruben A. Mesa, MD, president and executive director of Atrium Health LCI and Atrium Health Wake Forest Baptist Comprehensive Cancer Center. "}],"_type":"block","style":"normal","_key":"d023c1059c7e"},{"markDefs":[],"children":[{"marks":["em"],"text":"This transcript has been lightly edited for clarity. ","_key":"e36459dcaa93","_type":"span"}],"_type":"block","style":"normal","_key":"07e96385b16b"},{"style":"normal","_key":"ae2fb98c3ba4","markDefs":[],"children":[{"_type":"span","marks":["strong","underline"],"text":"Transcript","_key":"b2932f006247"}],"_type":"block"},{"_type":"block","style":"normal","_key":"8f3609c44ba1","markDefs":[],"children":[{"_type":"span","marks":["strong"],"text":"Could you share insights into the challenges and opportunities for addressing health disparities, particularly in rural and minority populations, within a comprehensive cancer center?","_key":"a6ceb3dc9840"}]},{"style":"normal","_key":"87620025e203","markDefs":[],"children":[{"_type":"span","marks":[],"text":"As we think about health disparities, there are many drivers. But they start with really prompt access to care, as well as engagement and trust. We need individuals and populations to be able to trust in the health care that they can receive, to be able to be as proactive as we can in terms of a position in the community, to be able to have prevention, early detection, or screening when it is available, as well as prompt attention when there is a sign or a signal that a malignancy potentially could be present.","_key":"0e4c7d2d83500"}],"_type":"block"},{"children":[{"_type":"span","marks":[],"text":"","_key":"9b9d29263bb40"}],"_type":"block","style":"normal","_key":"037058ef8119","markDefs":[]},{"_type":"block","style":"normal","_key":"276b748c0a1e","markDefs":[],"children":[{"_type":"span","marks":[],"text":"What we've learned is that the ability for individuals to get care close to home is critically important. The ability to travel to receive care at a great distance is a tremendous luxury in terms of impact on family members having to miss work that may or may not be feasible, in terms of concerns of financial burden of being able to access that care, and in terms of even just the transportation itself.","_key":"9efe00787f260"}]},{"markDefs":[],"children":[{"marks":[],"text":"","_key":"5a3847d9ce4d0","_type":"span"}],"_type":"block","style":"normal","_key":"34a320a56dd9"},{"style":"normal","_key":"5990d8e51d76","markDefs":[],"children":[{"_type":"span","marks":[],"text":"So, as a comprehensive cancer center, one of the things we've learned is we need to move beyond the ivory tower model where we're in a big city, a big multi-building cancer center, and expect everyone to drive from great distances or fly to receive all their care there. The ability to be able to detect, intervene, and care for the vast majority of things as close to people's homes as possible is crucially important. 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