Patient-Driven Data
What’s new on our website?
Check out our new list of over 100 autoimmune diseases. We’ve updated the disease profiles with new prevalence figures as well as new graphics based on data from All of Us and our registry.
Why an all autoimmune disease registry?
Established in 2016, the Autoimmune Registry is modeled on the National Cancer Registry, which provides data on incidence, demographics, and survival rates for all types of cancer in the United States. Before us, no such registry existed for autoimmune diseases, leaving patients uncertain about how their diseases would progress or their potential for developing comorbid autoimmune diseases or cancers. Our goal is to collect this data to better understand autoimmune diseases, the populations they affect, the risks of comorbidities, and their natural progression over time.
In 2022, the National Academy of Sciences recently published a report on Enhancing NIH Research on Autoimmune Diseases, in which it identified these same gaps in data and research:
Strong epidemiologic data of the U.S. incidence and prevalence of autoimmune diseases in the past 10–20 years are limited, and a lack of population-based data is of particular concern.
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there are important gaps, including incidence and prevalence trends, comprehensive evaluations of the risk factors and the burden (including direct and indirect costs) of these diseases, the impact on different populations, the trajectory of these diseases from the period before disease manifests through the life course, and the impact of specific treatments and interventions.
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Join our monthly patient advocacy network webinar!
Join our monthly patient advocacy network webinar!
Clinical Trial Opportunities
The Autoimmune Registry supports several clinical trials, which the FDA requires to approve new medications and treatments. We use Patient Navigators, who are autoimmune disease patients, to help support and represent the interests of participants entering the studies. Learn more about the trials here.
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.
The Autoimmune Registry was recently cited numerous times in the 2022 report on Enhancing NIH Research on Autoimmune Diseases published by the National Academy of Sciences. The report cited our registry’s list and classification of autoimmune diseases by level of evidence, and reiterated the need for collecting large-scale data on autoimmune disease patients over time.
Diversity isn't just a buzzword when researching autoimmune and rare diseases—it’s essential for better treatments and care. These conditions affect people from all backgrounds, but clinical trials often don’t reflect that diversity.