Sufferers dwelling with myasthenia gravis (MG) present their well being and symptom expertise information in a secure, 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 Basis of America (MGFA™), the biggest, main affected person advocacy group solely devoted to the myasthenia gravis (MG) group re-launched its MGFA World MG Affected person Registry in partnership with Alira Well being. The MGFA registry permits MG sufferers to soundly, securely, and confidentially contribute their well being and symptom information to assist researchers design and drive analysis research and scientific trials for making MG discoveries and discovering higher therapies to enhance MG affected person outcomes.
The MGFA registry permits MG sufferers to soundly, securely, and confidentially contribute their well being and symptom information.
Alira Well being has offered new, extra environment friendly strategies for sufferers to submit their information by way of a cell phone software referred to as Well being Storylines™, in addition to analytical assist to unlock insights from the registry. The re-launch of the registry capitalizes on technological advances and higher understanding of MG. Sufferers will add their information to the structured registry questionnaire twice a yr, whereas additionally having the chance 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.
“It’s essential 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 goals,” mentioned Samantha Masterson, president and chief government officer of the MGFA. “Sufferers from all over the world require information privateness, and now they will safely and securely share their information to assist analysis sponsors make MG discoveries that might result in higher outcomes and coverings. Affected person 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 data to acquire more practical therapies, 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 Well being. “MGFA World MG Affected person Registry is a vital step on this path. We’re 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 straight by sufferers with best-in-class privateness and safety compliance. The MGFA registry is a strong, real-world information supply that may allow analysis and scientific trials with entry to recruitment and direct affected person insights. Analysis leveraging the registry might be shared with individuals, in order that they keep actively concerned all through the method and see how their contribution of information advantages the group.
MG sufferers can be part of the registry by utilizing the next hyperlink to entry and set up an account web page.
About Alira Well being
Alira Well being is a global patient-centric and technology-enabled advisory agency whose mission is to humanize healthcare.
The Myasthenia Gravis Basis of America (MGFA) is the biggest, main affected person advocacy group devoted to enhancing therapies 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 worldwide MG Group.
MGFA Contact Data:
Vice President, World Advertising & Communications
Nationwide Director, Digital and Content material Advertising
Alira Well being Contact Data:
Vice President of World Advertising
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SOURCE Myasthenia Gravis Basis of America, Inc.
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