Patients dwelling with myasthenia gravis (MG) present their well being and symptom expertise information in a protected, safe registry to drive new analysis and discoveries for improved illness understanding, higher affected person outcomes and coverings.BOSTON, Jan. 25, 2023 /PRNewswire/ — The Myasthenia Gravis Foundation of America (MGFA™), the largest, main affected person advocacy group solely devoted to the myasthenia gravis (MG) group re-launched its MGFA Global MG Patient Registry in partnership with Alira Health. The MGFA registry allows MG sufferers to soundly, securely, and confidentially contribute their well being and symptom information to assist researchers design and drive analysis research and medical trials for making MG discoveries and discovering higher remedies to enhance MG affected person outcomes.
Alira Health has offered new, extra environment friendly strategies for sufferers to submit their information by way of a cell phone utility referred to as Health Storylines™, in addition to analytical help to unlock insights from the registry. The re-launch of the registry capitalizes on technological advances and higher understanding of MG. Patients will add their information to the structured registry questionnaire twice a 12 months, whereas additionally having the alternative to contribute their day-to-day well being expertise information utilizing the app, in order that researchers can profit from a deeper understanding of the lived expertise of sufferers with MG.
The MGFA registry allows MG sufferers to soundly, securely, and confidentially contribute their well being and symptom information.
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“It is important for researchers and clinicians to have entry to actual, up-to-date affected person information to assist design and construct analysis research and trials to extra precisely show out hypotheses and targets,” mentioned Samantha Masterson, president and chief government officer of the MGFA. “Patients from round the world require information privateness, and now they’ll safely and securely share their information to assist analysis sponsors make MG discoveries that would result in higher outcomes and coverings. Patient contributions to the registry will assist drive new and higher methods to deal with MG.”
“We see a future the place sufferers are empowered to hold their very own end-to-end well being care info to acquire more practical remedies, higher handle a illness, be more healthy, or actively equip their circle of care to help them,” mentioned Gabriele Brambilla, chief government officer of Alira Health. “MGFA Global MG Patient Registry is a crucial step on this path. We are honored to accomplice with them to assist enhance the lives of sufferers with myasthenia gravis.”This affected person registry captures longitudinal information on MG affected person experiences, shared instantly by sufferers with best-in-class privateness and safety compliance. The MGFA registry is a robust, real-world information supply that can allow analysis and medical trials with entry to recruitment and direct affected person insights. Research leveraging the registry shall be shared with members, in order that they keep actively concerned all through the course of and see how their contribution of information advantages the group. MG sufferers can be part of the registry through the use of the following hyperlink to entry and set up an account web page.https://www.mgregistry.org/ About Alira HealthAlira Health is a global patient-centric and technology-enabled advisory agency whose mission is to humanize healthcare.About MGFAThe Myasthenia Gravis Foundation of America (MGFA) is the largest, main affected person advocacy group devoted to enhancing remedies for myasthenia gravis (MG) by funding analysis discoveries and offering patient-centric packages, supplies, steerage, occasions, and webinars to attach, educate, and help members of the international MG Community.MGFA Contact Information: Michael AntonellisVice President, Global Marketing & Communications[email protected]+1-617-610-2411Kate StoberNational Director, Digital and Content Marketing[email protected]+1-480-744-2705Alira Health Contact Information: Susan IrvingVice President of Global Marketing[email protected]+1-617-794-3478SOURCE Myasthenia Gravis Foundation of America, Inc.
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