According to the National Institutes for Health, there are over 80 autoimmune diseases (ADs), including myasthenia gravis, identified to date. The National Institutes for Health notes that autoimmune disease tends to run in families. NIH also notes that if you have one autoimmune disease, you may have more — and you may have different ones than your parent did (or your siblings do).
Autoimmune disease is a complicated landscape of genetics and illness that affects over 50 million people in the U.S.
Conquer Myasthenia Gravis would like to encourage research that helps us understand how myasthenia gravis fits in the bigger picture of all ADs. That’s why we’ve elected to be part of the Autoimmune Research Network (ARNet), sponsored and funded by the American Autoimmune Disease Related Association.
The Autoimmune Research Network
ARNet is a network of autoimmune disease advocacy organizations that will foster research into myasthenia gravis and other autoimmune conditions. ARNet gives patients a way to participate in broad-based autoimmune disease research. .
Researchers will be able to use ARNet to find out how many people are qualified to participate in their medical research projects. Medical research project participation is strictly voluntary and you may opt out of ARNet participation.
How ARNet Works
- Individuals fill out a survey through a link provided by the disease-specific patient advocacy group. The Conquer Myasthenia Gravis “Participate Now” survey link is below.
- Patient data is “blinded” and stored by ARNet’s software development firm. “Blinded” data means identifying information such as your name, address, email, phone and any other data that can directly identify you is removed. Data is protected by this company’s encryption and security measures, as well as security measures taken by Conquer Myasthenia Gravis.
- Researchers can perform queries on ARNet’s blinded data. They can identify individual anonymous records that could qualify for a study.
- If your record qualifies for a study, the researcher will ask Conquer Myasthenia Gravis to contact you. Conquer Myasthenia Gravis provides each qualifying patient with information about the research and how to participate. Researchers cannot contact patients directly.
- If you choose to participate, you contact Conquer Myasthenia Gravis (or the researcher) to learn more about the proposed research and how to participate in it.
Click the button to participate in the ARNet Survey through Conquer MG’s exclusive ARNet link. Participation is completely voluntary and there is no cost to you.
ARNet is a program run by the American Autoimmune Related Diseases Association, Inc. (AARDA) in collaboration with patient advocacy groups such as Conquer Myasthenia Gravis. These patient advocacy groups advocate on behalf of patients with specific autoimmune diseases.