autoimmune registry network

The Autoimmune Registry is connecting organizations to share our collective knowledge and create a united front in the fight against autoimmune diseases. As a class, autoimmune diseases affect millions of Americans, and they can significantly impair the quality of life of patients, and even be life threatening. Despite having almost the same prevalence as cancer, advocacy for autoimmune diseases has been fractured, leaving many believing these diseases are rare and hiding the huge impact they have as a class. Working together, we can raise awareness of the impact of autoimmune disease, increase funding for research, better understand how these diseases are connected, and find strategies to combat all of them.

Check our our current members HERE.

Join the Autoimmune Registry Network today!!

Submit this form and we will reach out to schedule a meeting with your organization. Review our Network Agreement.

Learn more:

    • Your organization will be listed on our Network Members page

    • You will receive a customized report on your organization’s autoimmune disease, which you can share with your members. The report will include statistics on:

      • Symptoms reported by patients;

      • Medications taken by patients;

      • Lab tests and ranges from patients;

      • Other diseases comorbid with your organization’s disease; and

      • Other trends identified from the NIH’s All of Us database

    • Your members will be eligible to apply for patient stipends for attending advocacy conferences

    • By being a Network member, your organization will also get to vote on research initiatives funded by the Autoimmune Registry

  • No. All support we provide is free of charge.

  • If you run an organization that supports patients with one or more autoimmune diseases, we can serve as your registry. You can create a survey for the conditions you support and we can send it to your participants, as well as those already in the ARI Registry. All data on participants who report having the condition you support will be accessible to you. We can help prepare reporting on the data you collect so you can use the data for newsletters and any other purposes that support your mission, including fundraising.

    We can also help you gain free access to the NIH All of Us program, which has data on over 250,000 Americans.

    There are no charges of any kind for this collaboration.

  • ARI can be the greatest help for organizations building their own registries. We offer free database consulting expertise from data experts with decades of experience working with registry data, including help with data models, nomenclature, and extraction, transformation and loading (ETL).

    You do not have to share your registry data, but we do ask you to list your registry in our Autoimmune Registry List, including the total number of participants and the questions for which you have collected responses.

    All of this support is free.

  • The Autoimmune Registry maintains the Autoimmune Registry List, a list of disease-specific registries where at least 30% of their participants have an autoimmune form of the disease (when it’s not 100%). Pharma companies, independent research organizations and academic researchers come to us looking for registry data on specific diseases. We refer all of these requests to you and other partners. Collaborating with ARI is simply a way to expand outreach for your organization and provide more opportunities for your participants to support research.

    Nonprofit organizations with their own registries may reach out to ARI’s participants to get them to join their registries. We can even transfer our data if the participants request it.

    Organizations do not share their participant data with ARI, but we do ask you to list your registry in our Autoimmune Registry List, including the total number of participants and the questions for which you have collected responses.

    We also offer totally free support for all nonprofit, disease-specific registries. This includes help with data encoding, access to data sources like the NIH All of Us program, and free online courses on the OMOP and i2b2 data models (used by many academic medical centers).

    There are no charges of any kind for this collaboration.