The Autoimmune Registry supports several clinical trials, which are required by the FDA for the approval of new medications and treatments. We use Patient Navigators, who are autoimmune disease patients themselves, to help support and represent the interests of participants that enter into the studies. Learn more about the trials here.
Events:
Autoimmune Registry Monthly Webinar. April 18th, 2024, from 12-1 pm Eastern via Zoom. Learn more here.
Why an all autoimmune disease registry:
Established in 2016, the Autoimmune Registry is modelled after the National Cancer Registry, which provides data on cancer incidence, demographic background, and survival rates in the United States. Before us, no such registry existed for patients of autoimmune diseases, who often have no idea how their diseases will advance and what the rates are for developing comorbid autoimmune diseases or cancers. Our goal is to collect these types of data so we can have a better understanding of autoimmune diseases, the populations they affect, their risks for comorbid diseases, and their natural progression over time.
At the Autoimmune Registry, we are driven by a mission to fill these gaps and advance research in the field of autoimmune diseases. We do so by 1) collecting and analyzing data, 2) connecting patients with researchers and clinical trials, and 3) partnering with other patient advocacy groups to raise awareness on the impact of autoimmune diseases.
Featured work:
The Autoimmune Registry is working with the NIH’s All of Us platform and has been featured for its work studying the prevalence and incidence of autoimmune diseases.