Stanford Medicine Survey for X-ALD Caregivers (due by Feb 28, 2020)

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It most severely affects boys and men. This brain disorder destroys myelin, the protective sheath that surrounds the brain's neurons -- the nerve cells that allow us to think and to control our muscles. It knows no racial, ethnic or geographic barriers.</p><p>The most devastating form of ALD appears in childhood, generally between the ages of four and ten<span> </span>years old. Normal, healthy boys suddenly begin to regress. At first, they simply show behavioral problems, such as withdrawal or difficulty concentrating. Gradually, as the disease ravages their brain, their symptoms grow worse, including blindness and deafness, seizures, loss of muscle control, and progressive dementia. This relentless downward spiral leads to either death or permanent disability, usually within 2 to 5 years from diagnosis.</p><p>Today, new scientific knowledge offers hope for the successful treatment and prevention of ALD. 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It most severely affects boys and men. This brain disorder destroys myelin, the protective sheath that surrounds the brain's neurons -- the nerve cells that allow us to think and to control our muscles. It knows no racial, ethnic or geographic barriers.</p><p>The most devastating form of ALD appears in childhood, generally between the ages of four and ten<span> </span>years old. Normal, healthy boys suddenly begin to regress. At first, they simply show behavioral problems, such as withdrawal or difficulty concentrating. Gradually, as the disease ravages their brain, their symptoms grow worse, including blindness and deafness, seizures, loss of muscle control, and progressive dementia. This relentless downward spiral leads to either death or permanent disability, usually within 2 to 5 years from diagnosis.</p><p>Today, new scientific knowledge offers hope for the successful treatment and prevention of ALD. 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data-collection-id="52eb3f6ae4b058d7164a4ae9" data-edit-main-image="Banner" >  <div class="article-wrapper"> <article class="hentry promoted promoted-block-image author-steve-barsh post-type-text" id="article-5dfeaf5550c5304730165d18" data-item-id="5dfeaf5550c5304730165d18">  <header> <h1 class="entry-title" itemprop="headline" data-content-field="title"> <a href="/news-1/2019/12/21/stanford-medicine-survey-for-x-ald-caregivers-due-by-feb-28-2020">Stanford Medicine Survey for X-ALD Caregivers (due by Feb 28, 2020)</a> </h1> <div class="meta"> <span class="date"><time class="published dt-published" datetime="2019-12-21" itemprop="datePublished" pubdate>December 21, 2019</time></span> <span class="author"><a href="/news-1?author=52e89bf9e4b00b97daffaafb" rel="author">Steve Barsh</a></span> </div> </header>  <div class="special-content"><div class="sqs-layout sqs-grid-12 columns-12" data-layout-label="Promoted Block" data-type="promoted-block" id="promoted-block-5dfeaf5550c5304730165d18"><div class="row sqs-row"><div class="col sqs-col-12 span-12"><div class="sqs-block image-block sqs-block-image" data-aspect-ratio="25.080906148867317" data-block-type="5" id="block-yui_3_17_2_1_1576972103170_18051"><div class="sqs-block-content"> <div class=" image-block-outer-wrapper layout-caption-hidden design-layout-inline combination-animation-none individual-animation-none individual-text-animation-none " data-test="image-block-inline-outer-wrapper" > <figure class=" sqs-block-image-figure intrinsic " style="max-width:390px;" > <div class="image-block-wrapper" data-animation-role="image" > <div class="sqs-image-shape-container-element has-aspect-ratio " style=" position: relative; padding-bottom:25.08090591430664%; overflow: hidden;-webkit-mask-image: -webkit-radial-gradient(white, black); " > <img data-stretch="false" data-src="https://images.squarespace-cdn.com/content/v1/52e89bfae4b06b90fc8aa357/1576972251602-98Z8H519257TYVPRD74Q/download.png" data-image="https://images.squarespace-cdn.com/content/v1/52e89bfae4b06b90fc8aa357/1576972251602-98Z8H519257TYVPRD74Q/download.png" data-image-dimensions="390x129" data-image-focal-point="0.5,0.5" alt="download.png" data-load="false" elementtiming="system-image-block" src="https://images.squarespace-cdn.com/content/v1/52e89bfae4b06b90fc8aa357/1576972251602-98Z8H519257TYVPRD74Q/download.png" width="390" height="129" alt="" sizes="(max-width: 640px) 100vw, (max-width: 767px) 100vw, 100vw" style="display:block;object-fit: cover; width: 100%; height: 100%; object-position: 50% 50%" onload="this.classList.add("loaded")" srcset="https://images.squarespace-cdn.com/content/v1/52e89bfae4b06b90fc8aa357/1576972251602-98Z8H519257TYVPRD74Q/download.png?format=100w 100w, 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class="sqs-layout sqs-grid-12 columns-12" data-layout-label="Post Body" data-type="item" data-updated-on="1576972466647" id="item-5dfeaf5550c5304730165d18"><div class="row sqs-row"><div class="col sqs-col-12 span-12"><div class="sqs-block html-block sqs-block-html" data-block-type="2" id="block-e81be450ce7b0c9765dd"><div class="sqs-block-content"> <div class="sqs-html-content"> <p class="" style="white-space:pre-wrap;">Do you care for a child who had a positive newborn screen for X-linked adrenoleukodystrophy (X-ALD)?</p><p class="" style="white-space:pre-wrap;">If so, please consider <a href="https://tinyurl.com/y6jx7ht7">participating in a <strong>one-time online survey</strong>.</a> </p><p class="" style="white-space:pre-wrap;">The goal of the study is to help healthcare professionals better understand the quality of life for caregivers of children with a positive X-ALD newborn screen. In the future we hope to use this information to better meet caregivers needs. For additional information and <strong>to </strong><a href="https://tinyurl.com/y6jx7ht7"><strong>access the free online survey</strong></a><strong> , please visit </strong><a href="https://tinyurl.com/y6jx7ht7 "><strong>https://tinyurl.com/y6jx7ht7</strong></a><strong> </strong></p><p class="" style="white-space:pre-wrap;">The online survey will be available <strong>until February 28, 2020</strong>. Questions? Please email the study director, Kayla Muirhead, B.S., at kaylajm@stanford.edu. Participant's rights questions, contact 1-866-680-2906. </p><p class="" style="white-space:pre-wrap;"><strong>X-linked Adrenoleukodystrophy (X-ALD) caregiver study seeking participants! </strong></p><p class="" style="white-space:pre-wrap;">The study consists of a <strong>one- time online survey </strong>for caregivers of children who screen positive for X-ALD on newborn screening. The questions in the survey ask about basic demographic information and caregiver quality of life. It is estimated to take about 10-20 minutes to complete. </p><p class="" style="white-space:pre-wrap;"><strong>What are the goals of the study? </strong></p><ul data-rte-list="default"><li><p class="" style="white-space:pre-wrap;">Measure quality of life for caregivers.</p></li><li><p class="" style="white-space:pre-wrap;">Suggest factors that influence caregiver quality of life.</p></li><li><p class="" style="white-space:pre-wrap;">Use the information from this study to help providers better care for families with X-ALD. </p></li></ul><p class="" style="white-space:pre-wrap;"><strong>What can participants of the X-ALD caregiver study expect? </strong></p><p class="" style="white-space:pre-wrap;">Caregivers will be asked to: </p><ol data-rte-list="default"><li><p class="" style="white-space:pre-wrap;">Provide their child’s newborn screening results to study personnel </p></li><li><p class="" style="white-space:pre-wrap;">Answer a series of questions on the 10-20 minute one-time online survey that measure quality of life and give providers additional background information </p></li></ol><p class="" style="white-space:pre-wrap;"><strong>Why participate in the X-ALD caregiver study? </strong></p><p class="" style="white-space:pre-wrap;">This information will help doctors and healthcare providers care for affected individuals and their families and will be used to inform ways to improve overall quality of life. </p><p class="" style="white-space:pre-wrap;">There will be no cost to families associated with participating in this study. If you provide your contact information, you will be entered into a raffle to be conducted on March 2, 2020 (3 days after the survey is closed) for a $50 Amazon gift card. The drawing will be conducted by Kayla Muirhead in Palo Alto, California. Participation in the study is not required in order to participate in the raffle. You can enter the raffle if you do not start or complete the study task. The chance of winning a prize is approximately 1 in 50. The winner will be notified immediately by email and provided with information on how to receive the prize. </p><p class="" style="white-space:pre-wrap;"><strong>Who can participate in the X-ALD caregiver study? </strong></p><p class="" style="white-space:pre-wrap;">Any caregiver who has a child with a confirmed diagnosis of X-ALD found on newborn screening in the states of California or New York. </p><p class="" style="white-space:pre-wrap;"><strong>Interested in participating in the study? </strong></p><p class="" style="white-space:pre-wrap;">Access the one-time online survey at <strong>https://tinyurl.com/y6jx7ht7 </strong>(survey available until February 28, 2020). </p><p class="" style="white-space:pre-wrap;">The Principal Investigator of the study is Kayla Muirhead, B.S. To learn more about the study or for inquiries, please contact Kayla Muirhead at kaylajm@stanford.edu. Participant's rights questions, contact 1-866-680-2906. </p><p class="" style="white-space:pre-wrap;">*If you provide your contact information, you will be entered into a raffle to be conducted on March 2, 2020 (3 days after the survey is closed) for a $50 Amazon gift card. The drawing will be conducted by Kayla Muirhead in Palo Alto, California. Participation in the study is not required in order to participate in the raffle. You can enter the raffle if you do not start or complete the study task. The chance of winning a prize is approximately 1 in 50. The winner will be notified immediately by email and provided with information on how to receive the prize. </p> </div> </div></div></div></div></div></div>  <footer class="clear"> <div class="meta"> <div class="first meta-row"> </div> <div class="second meta-row"> <span class="squarespace-social-buttons inline-style" data-system-data-id="" data-asset-url="https://static1.squarespace.com/static/52e89bfae4b06b90fc8aa357/52eb3f6ae4b058d7164a4ae9/5dfeaf5550c5304730165d18/1576972466999/" data-record-type="1" data-full-url="/news-1/2019/12/21/stanford-medicine-survey-for-x-ald-caregivers-due-by-feb-28-2020" data-title="Stanford Medicine Survey for X-ALD Caregivers (due by Feb 28, 2020)"></span> <span class="sqs-simple-like" data-item-id="5dfeaf5550c5304730165d18" data-like-count="0"> <span class="like-icon"></span> <span class="like-count"></span> </span> </div> </div> </footer> </article>  <nav class="pagination clear"> <a class="prev-item" href="/news-1/2021/1/31/minoryx-presents-topline-results-from-phase-23-study-demonstrating-significant-clinical-benefit-for-adrenomyeloneuropathy-amn">← Minoryx presents topline results from Phase 2/3 study demonstrating significant clinical benefit for adrenomyeloneuropathy (AMN)</a><a class="next-item" href="/news-1/2019/9/7/ald-newborn-screening-now-in-texas">ALD Newborn Screening Now in Texas! →</a> </nav>  <section id="comments-5dfeaf5550c5304730165d18" class="comments-wrapper"> <div class="squarespace-comments" id="comments-5dfeaf5550c5304730165d18" data-item-id="5dfeaf5550c5304730165d18" data-public-comment-count="0" data-comment-state="1"></div> </section> </div> <aside id="sidebar"><div class="sqs-layout sqs-grid-1 columns-1 empty" data-layout-label="Sidebar Content" data-type="block-field" id="sidebarBlocks"><div class="row sqs-row"><div class="col sqs-col-1 span-1"></div></div></div></aside> </section> <div class="sqs-layout sqs-grid-12 columns-12 empty" data-layout-label="News Footer Content" data-type="block-field" id="item-5dfeaf5550c5304730165d18"><div class="row sqs-row"><div class="col sqs-col-12 span-12"></div></div></div>  <div class="info-footer-wrapper clear"> <div class="info-footer"> <div class="sqs-layout sqs-grid-12 columns-12 empty" data-layout-label="Info Footer Content" data-type="block-field" data-updated-on="1395639618818" id="infoFooterBlock"><div class="row sqs-row"><div class="col sqs-col-12 span-12"></div></div></div> <div id="socialLinks" class="social-links sqs-svg-icon--list" data-content-field="connected-accounts"> <a href="http://www.facebook.com/stopald" target="_blank" class="sqs-svg-icon--wrapper facebook"> <div> <svg class="sqs-svg-icon--social" viewBox="0 0 64 64"> <use class="sqs-use--icon" xlink:href="#facebook-icon"></use> <use class="sqs-use--mask" xlink:href="#facebook-mask"></use> </svg> </div> </a> <a href="https://twitter.com/StopALD" target="_blank" class="sqs-svg-icon--wrapper twitter"> <div> <svg class="sqs-svg-icon--social" viewBox="0 0 64 64"> <use class="sqs-use--icon" xlink:href="#twitter-icon"></use> <use class="sqs-use--mask" xlink:href="#twitter-mask"></use> </svg> </div> </a> </div> </div> </div> <footer id="footer" class="clear"> <div class="sqs-layout sqs-grid-12 columns-12" data-layout-label="Footer Content" data-type="block-field" data-updated-on="1395639683170" id="footerBlock"><div class="row sqs-row"><div class="col sqs-col-12 span-12"><div class="sqs-block html-block sqs-block-html" data-block-type="2" id="block-7d9d7fddc71929b3cf64"><div class="sqs-block-content"> <div class="sqs-html-content"> <p>Copyright (c) 2004 - Present by The Stop ALD Foundation. 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Stanford Medicine Survey for X-ALD Caregivers (due by Feb 28, 2020) — The Stop ALD Foundation