How Does the Autoimmune Registry Help the Autoimmune Disease Community?
Living with one or multiple autoimmune diseases can be overwhelming, especially when there are often no answers to questions like why it happened, how it will progress, and which treatments will work for you. This is where a registry of anonymous patient data can be helpful and where the Autoimmune Registry comes in. The Autoimmune Registry helps patients by providing trusted resources on over 100 autoimmune diseases and collecting patient data that helps researchers better understand autoimmune diseases. Our goal is to use data to raise awareness and drive advancements in research and treatment to improve patient outcomes.
What the Autoimmune Registry offers
The Autoimmune Registry is a centralized database that collects vital information on patients. By enrolling, patients help accelerate research, improve disease tracking, and support future clinical trials. Our secure platform transforms patient-contributed data into aggregate statistics on over 100 autoimmune diseases that can inform scientific research and public health initiatives. Enroll today.
Autoimmune disease list and profiles
Our website offers disease-related information and patient resources for over 100 autoimmune diseases. Patients and researchers can search for diseases by categories and/or symptoms and explore our extensive list of disease profiles. Visit our disease list.
Educational webinars
We offer two series of educational webinars, one focused on patient advocacy groups and the other on clinical trials. Our patient advocacy webinars feature guest speakers each month, who share resources and insights on how to effectively build advocacy groups and/or new research on their focus diseases. Our clinical trials webinars offer informational sessions on what clinical trials are, how to join one, and what patients should know when deciding to participate in a trial.
To learn about upcoming webinars, visit here.
The Autoimmune Registry will be hosting its Clinical Trials Webinar on Monday, July 14, 2025, at 1:30pm EST. We are partnering with the Vasculitis Foundation to discuss the importance of clinical trials, the ethics protecting participants, what patients should ask prior to joining a trial, and how patients can learn about trial opportunities. Join us as we share insights aimed at empowering patients and caregivers to navigate clinical trials confidently.
Research and advocacy
We collaborate with leading medical institutions and researchers to support autoimmune-focused studies. By joining our registry or participating in surveys, you become a key part of driving change, helping advance better treatments, policies, and awareness. Enroll in the registry to be notified of upcoming research opportunities.
To learn more about the Autoimmune Registry, please visit www.autoimmuneregistry.org. For any questions or concerns, please email aaron@autoimmunregistry.org or ingrid@autoimmuneregistry.org.
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