March Autoimmune Disease Awareness Campaign:
Join our March awareness campaign by adding your photo to our Faces of Autoimmune Diseases collage. You can also make a one-click video here or share your individual story here. Help spread awareness by sharing your photos and collages on social media with the hashtags #AutoimmuneAwarenssVoices and #AutoimmuneDiseaseAwareness.
Clinical trials:
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.
Events:
Autoimmune Registry is hosting our Clinical Trials Webinar on October 7th, from 4-5 pm EST that explores new technologies used in autoimmune disease clinical trials. Specifically, we will focus on CAR-T therapy to give patients a better understanding of the technology involved. We’ve invited Dr. Dimachkie and Dr. Pasnoor to present their research. Register here!
Autoimmune Registry Monthly Webinar returns on October 23rd, from 12-1 pm EST with speakers Shawn Ramagos and Christina Ramirez from Own MG. Register 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.
The National Academy of Sciences recently published a 2022 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.”
