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.
. . .
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.