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Autoimmune Registry- Become a Researcher

Become a Researcher

ARI helps researchers find and recruit patients for their research using the AR Explorer, which allows researchers to compute statistics using anonymized data provided by patients.  An IRB is not required to use the AR Explorer.

After using the Explorer, if a researcher discovers a cohort they would like to recruit, the researcher submits a proposal to our Institutional Review Board (IRB) and ARI arranges to contact patients to inform them about the study. (The Explorer data is not available to researchers.)

To obtain access to the AR Explorer, researchers follow this process:

  • Research Application: Researchers apply for an AR account, providing academic or professional references appropriate to the research. ARI will check credentials and ensure researchers work has a direct impact on patients. Basic research is not excluded, but a researcher must demonstrate a record of being able to translate that research into patient benefits.

  • Training: Researchers must have completed training in the protection of human subjects (CITI -https://www.citiprogram.org/).  

  • Account Creation: The researcher will be provided with a username and password for use of the AR Explorer.

  • Submit a research proposal to AR: Before using the Explorer, a researcher must provide AR with a research proposal that describes what the researcher is interested in studying. We will not require a detailed proposal because we want researchers to be able to run queries on an ad-hoc basis to test hunches and early hypotheses. However, the Explorer cannot be used for arbitrary queries.

Please use our contact form so we can contact you when the Registry data becomes available.