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<span><a href="https://emsp.org/projects/">Projects</a></span> <span class="sep"></span> <span class="breadcrumb_last" aria-current="page">Impact of Multiple Sclerosis Symptoms (IMSS)</span></span> </div> <div class="event_single"> <div class="event_big_img"> <img width="1920" height="1080" src="https://emsp.org/wp-content/uploads/2022/12/Impact-of-Multiple-Sclerosis-Symptoms-IMSS-Survey-Logo.png" class="attachment-full size-full wp-post-image" alt="Impact of Multiple Sclerosis Symptoms IMSS Survey Logo" decoding="async" fetchpriority="high" srcset="https://emsp.org/wp-content/uploads/2022/12/Impact-of-Multiple-Sclerosis-Symptoms-IMSS-Survey-Logo.png 1920w, https://emsp.org/wp-content/uploads/2022/12/Impact-of-Multiple-Sclerosis-Symptoms-IMSS-Survey-Logo-450x253.png 450w, https://emsp.org/wp-content/uploads/2022/12/Impact-of-Multiple-Sclerosis-Symptoms-IMSS-Survey-Logo-1024x576.png 1024w, https://emsp.org/wp-content/uploads/2022/12/Impact-of-Multiple-Sclerosis-Symptoms-IMSS-Survey-Logo-768x432.png 768w, https://emsp.org/wp-content/uploads/2022/12/Impact-of-Multiple-Sclerosis-Symptoms-IMSS-Survey-Logo-1536x864.png 1536w" sizes="(max-width: 1920px) 100vw, 1920px" /> </div> <div class="row"> <div class="col-sm-4"> <div class="event_left"> <div class="social_share clearfix"> <h5>share project:</h5> <ul> <li><a href="https://www.facebook.com/sharer.php?u=https://emsp.org/projects/impact-of-multiple-sclerosis-symptoms-imss" target="_blank" class="fa fa-facebook"></a></li> <li><a href="https://www.twitter.com/share?url=https://emsp.org/projects/impact-of-multiple-sclerosis-symptoms-imss" target="_blank" class="fa fa-twitter"></a></li> <li><a href="https://www.linkedin.com/shareArticle?url=https://emsp.org/projects/impact-of-multiple-sclerosis-symptoms-imss" target="_blank" class="fa fa-linkedin"></a></li> </ul> </div> <h2>Impact of Multiple Sclerosis Symptoms (IMSS)</h2> <div class="date">15.12.2022</div> </div> </div> <div class="col-sm-8"> <div class="event_right"> <div class="flexible_block flx_txt_block typography"> <h2><b><span data-contrast="none">Assessing the Impact of Multiple Sclerosis Symptoms (IMSS) on the quality of life of people with MS to provide personalised care and support</span></b></h2> <h2><b><i><span data-contrast="none">Tell us how Multiple Sclerosis Symptoms are impacting your life?聽</span></i></b><span data-ccp-props="{"201341983":0,"335551550":2,"335551620":2,"335559739":0,"335559740":240}">聽</span></h2> <h3><b><span data-contrast="auto">Background and rationale</span></b><span data-ccp-props="{"201341983":0,"335551550":6,"335551620":6,"335559739":160,"335559740":259}">聽</span></h3> <p><span data-contrast="auto">Through its </span><a href="https://msbarometer.eu/2020"><span data-contrast="none">MS Barometer in 2020</span></a><span data-contrast="auto">, EMSP has highlighted the current gaps that health and social systems across Europe have in providing quality symptomatic care to people with Multiple Sclerosis (MS). Understanding the symptoms of MS has not been prioritized and symptoms are not adequately and equally managed. Consequently, there is lower availability and lower reimbursement of symptomatic treatments, including medication, rehabilitation in all its forms, while there is little attention to lifestyle changes.</span><span data-ccp-props="{"201341983":0,"335551550":6,"335551620":6,"335559739":160,"335559740":259}">聽</span></p> <p><span data-contrast="auto">For this reason, </span><b><span data-contrast="auto">EMSP alongside 24 national MS Societies and with the support and leadership of MS experts across Europe</span></b><span data-contrast="auto">, are leading on this research project titled </span><b><span data-contrast="auto">Impact of Multiple Sclerosis Symptoms (IMSS) survey </span></b><span data-contrast="auto">to shed light on the symptoms of MS, their prevalence and severity and how they are being management across Europe.聽</span><span data-ccp-props="{"201341983":0,"335551550":6,"335551620":6,"335559739":160,"335559740":259}">聽</span></p> <p><span data-contrast="auto">Documenting MS symptoms, their severity and how they are affected by MS symptomatic care and in return, how they affect the quality of life and disability is crucial at this stage and cannot be delayed. The aim is to further understand MS symptoms and what the best care that people living with MS are adopting and that are the most impactful to their quality of life.</span><span data-ccp-props="{"201341983":0,"335551550":6,"335551620":6,"335559739":160,"335559740":259}">聽</span></p> <p><span data-contrast="auto">This research will, therefore, serve as a catalytic agent for advocacy on MS symptom management and will aim to develop scientific and advocacy publications </span><span data-contrast="auto">to catalyze the development of harmonized and personalized approaches of management, treatment, and care.</span><span data-ccp-props="{"201341983":0,"335551550":6,"335551620":6,"335559739":160,"335559740":259}">聽</span></p> <h3><b><span data-contrast="auto">Aims of IMSS</span></b><span data-ccp-props="{"201341983":0,"335551550":6,"335551620":6,"335559739":160,"335559740":259}">聽</span></h3> <ol> <li><span data-contrast="auto">Measure and communicate the prevalence, clustering, burden (severity) and management of MS symptoms across EU and per country.</span><span data-ccp-props="{"201341983":0,"335551550":6,"335551620":6,"335559739":160,"335559740":259}">聽</span></li> <li><span data-contrast="auto">Sensitise individuals with MS about the presence and impact of MS symptoms (self-awareness), allowing them to raise proactively their symptoms situation in their contacts with healthcare professionals</span><span data-ccp-props="{"201341983":0,"335551550":6,"335551620":6,"335559739":160,"335559740":259}">聽</span></li> <li><span data-contrast="auto">Explore the relationship between onset and severity of MS symptoms and past and present use of Disease Modifying Drugs as well as adopted management systems.</span><span data-ccp-props="{"201341983":0,"335551550":6,"335551620":6,"335559739":160,"335559740":259}">聽</span></li> <li><span data-contrast="auto">Contribute to the definition of a possibly new image of the disease in Europe, thus influencing the improvement of symptomatic and pathogenetic treatment as well as multi-disciplinary rehabilitation.聽</span><span data-ccp-props="{"201341983":0,"335551550":6,"335551620":6,"335559739":160,"335559740":259}">聽</span></li> <li><span data-contrast="auto">Provide Patient Reported Evidence that enables the development of policies promoting the improvement of quality of life for people with MS by means of enhanced medical and rehabilitation care.</span><span data-ccp-props="{"201341983":0,"335551550":6,"335551620":6,"335559739":160,"335559740":259}">聽</span></li> </ol> <h3><b><span data-contrast="auto">How and when is IMSS taking place?</span></b><span data-ccp-props="{"201341983":0,"335551550":6,"335551620":6,"335559739":160,"335559740":259}">聽</span></h3> <p><span data-contrast="auto">The survey was an </span><span data-contrast="auto">anonymous online</span><span data-contrast="auto"> questionnaire, in all national languages of participating countries (details below). It is estimated that the survey took 20-30 minutes. </span><span data-ccp-props="{"201341983":0,"335551550":6,"335551620":6,"335559739":0,"335559740":240}">聽</span></p> <p><span data-contrast="auto">The survey included 4 sections after the background and consenting:</span><span data-ccp-props="{"201341983":0,"335551550":6,"335551620":6,"335559739":0,"335559740":240}">聽</span></p> <ul> <li data-leveltext="-" data-font="Open Sans" data-listid="48" data-list-defn-props="{"335551671":0,"335552541":1,"335559684":-2,"335559685":720,"335559991":360,"469769226":"Open Sans","469769242":[8226],"469777803":"left","469777804":"-","469777815":"hybridMultilevel"}" aria-setsize="-1" data-aria-posinset="0" data-aria-level="1"><i><span data-contrast="auto">Sociodemographic data and disease history</span></i><span data-contrast="auto"> including age, gender, ethnicity, employment, education, country, onset of symptoms and diagnosis, caregiver presence, living arrangements, presence of comorbidities, use of disease modifying drugs, as well as mobility and quality of life</span><span data-ccp-props="{"201341983":0,"335551550":6,"335551620":6,"335559739":0,"335559740":240}">聽</span></li> </ul> <ul> <li data-leveltext="-" data-font="Open Sans" data-listid="48" data-list-defn-props="{"335551671":0,"335552541":1,"335559684":-2,"335559685":720,"335559991":360,"469769226":"Open Sans","469769242":[8226],"469777803":"left","469777804":"-","469777815":"hybridMultilevel"}" aria-setsize="-1" data-aria-posinset="0" data-aria-level="1"><i><span data-contrast="auto">MS symptoms</span></i><span data-contrast="auto">, their presence and severity</span><span data-ccp-props="{"201341983":0,"335551550":6,"335551620":6,"335559739":0,"335559740":240}">聽</span></li> <li data-leveltext="-" data-font="Open Sans" data-listid="48" data-list-defn-props="{"335551671":0,"335552541":1,"335559684":-2,"335559685":720,"335559991":360,"469769226":"Open Sans","469769242":[8226],"469777803":"left","469777804":"-","469777815":"hybridMultilevel"}" aria-setsize="-1" data-aria-posinset="0" data-aria-level="1"><i><span data-contrast="auto">Treatment and care methods</span></i><span data-contrast="auto"> adopted by people with MS聽</span><span data-ccp-props="{"201341983":0,"335551550":6,"335551620":6,"335559739":0,"335559740":240}">聽</span></li> <li data-leveltext="-" data-font="Open Sans" data-listid="48" data-list-defn-props="{"335551671":0,"335552541":1,"335559684":-2,"335559685":720,"335559991":360,"469769226":"Open Sans","469769242":[8226],"469777803":"left","469777804":"-","469777815":"hybridMultilevel"}" aria-setsize="-1" data-aria-posinset="0" data-aria-level="1"><i><span data-contrast="auto">Satisfaction </span></i><span data-contrast="auto">with how people with MS are currently managing their symptoms.聽</span><span data-ccp-props="{"201341983":0,"335551550":6,"335551620":6,"335559739":0,"335559740":240}">聽</span></li> </ul> <p><span data-contrast="auto">The survey was launched on <strong>10</strong> </span><b><span data-contrast="none">May 2023 until the end of August 2023.</span></b>聽 Data collection has now been closed. The EMSP team is in the process of analysing and interpreting the data collected.</p> <h3><b><span data-contrast="auto">Who participated?</span></b><span data-ccp-props="{"201341983":0,"335551550":6,"335551620":6,"335559739":0,"335559740":240}">聽</span></h3> <p><span data-contrast="auto">Any person diagnosed with MS in the countries participating was able to take part in this survey after consenting. People with MS under the age of 18 will require the consent of their caregivers/parents.</span><span data-ccp-props="{"201341983":0,"335551550":6,"335551620":6,"335559739":0,"335559740":240}">聽</span><span data-contrast="auto">The survey reached 17,151 people with MS.</span><span data-ccp-props="{"201341983":0,"335551550":6,"335551620":6,"335559739":0,"335559740":240}">聽</span></p> <p><span data-contrast="auto">The survey was disseminated to MS communities through 24 MS Societies from 22 participating </span><i><span data-contrast="auto">European countries</span></i><span data-contrast="auto">, including Belgium, Croatia, Czech Republic, Denmark, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Lithuania, Luxembourg, Netherlands, Norway, Poland, Portugal, Romania, Serbia, Slovenia, Spain, and Switzerland.</span></p> <p><strong>This project is still ongoing. Data and findings are being analysed and interpreted. Findings are expected to be finalised by mid-2025.</strong></p> <p> </p> <p>Check more updates here:</p> <ul> <li><a href="https://emsp.org/news/impact-of-multiple-sclerosis-symptoms-imss-survey-now-live/">IMSS survey launch post</a>.</li> <li><a href="https://emsp.org/news/impact-of-multiple-sclerosis-symptoms-imss-where-are-we-now/#:~:text=EMSP%20and%2025%20member%20organisations,managing%20their%20symptoms%20across%20Europe.">IMSS data collection progress and how you can be involved</a>.</li> <li><a href="https://www.linkedin.com/posts/eumsplatform_ms-emsp2024-msresearch-activity-7187388370560372737-Dcv3/">Preliminary results at EMSP’s 2024 annual conference.</a></li> <li><a href="https://emsp.org/news/preliminary-results-of-the-imss-survey-presented-at-rims-annual-conference/">Preliminary IMSS findings presented at RIMS 29th annual conference</a>.</li> <li><a href="https://emsp.org/news/presenting-key-insights-from-the-imss-survey-at-ectrims-2024/">Presenting IMSS poster at ECTRIMS 2024</a>.</li> </ul> <p> </p> </div> <div class="flexible_block flx_txt_block typography"> <div class="txt"> <p style="text-align: center"><span data-contrast="auto">For any inquiries regarding IMSS please reach out to Patricia Moghames </span><a href="mailto:patricia.moghames@emsp.org"><span data-contrast="none">patricia.moghames@emsp.org</span></a><span data-contrast="auto">聽</span></p> <h5 style="text-align: center"><em><span style="text-decoration: underline">IMSS is an EMSP Project; the data collected through this survey will be owned by EMSP. The project is governed by the Working Group which consists of scientific and relevant stakeholders from national MS societies, Universities and MS centers.聽</span></em></h5> <h5 style="text-align: center"><em><span style="text-decoration: underline">The industry partners are financial supporters who do not have any control on the governance of this project. To date, IMSS is co-funded by Almirall, Biogen, Bristol Myers Squibb, Coloplast, Merck, Novartis, Roche, and Sanofi.</span></em></h5> </div> </div> </div> </div> </div> </div> </div> </div> <div id="newsletter"> <div class="container"> <div class="newsletter ds-flex align-items-center"> <h3>Subscribe to Newsletter</h3> <div class="wpforms-container " id="wpforms-5195"><form id="wpforms-form-5195" class="wpforms-validate wpforms-form" data-formid="5195" method="post" enctype="multipart/form-data" action="/projects/impact-of-multiple-sclerosis-symptoms-imss/" data-token="caff683273ff1c6179ea59f004a4706e" data-token-time="1732383786"><noscript class="wpforms-error-noscript">Please enable JavaScript in your browser to complete this form.</noscript><div class="wpforms-field-container"><div id="wpforms-5195-field_4-container" class="wpforms-field wpforms-field-text" data-field-id="4"><input type="text" id="wpforms-5195-field_4" class="wpforms-field-medium" name="wpforms[fields][4]" 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