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Protecting Your Privacy

ARI is committed to protecting your privacy. We do not give your personal identifying data to anyone. 

So, how does our safe and secure Autoimmune Registry work? 

Here’s how:

  1. We split your data into 2 virtual "buckets": Bucket 1 contains your name and email address. Bucket 2 contains the answers to our survey questions.
  2. We keep Bucket 1 in a private database that is not accessible to anyone except ARI. (If your data comes in through a Patient Advocacy Group partner, the PAG keeps that database.)
  3. We put the anonymized patient data from Bucket 2 into our Explorer. Here, researchers can obtain the numbers and statistics that we at ARI refer to simply as counts. We encourage you to check out the Explorer yourself. All contributors to the Registry have access to this Explorer.

As you will see, all you can get from the Explorer is a simple count. No names, contact information, or other identifying details are stored in the database. This information is anonymous. The Explorer has absolutely no way to view your identifying personal data.

What about when a researcher finds patients who might be eligible to participate in their research?

In that case, ARI contacts you to give you information about the researcher and the potential research opportunity.

If you ever do ask us to share your data with someone, we will do so only after completing an identity check to confirm that the request is really from you.

Participants of the Autoimmune Registry can also control their own settings within the Registry.

Remember: your story counts. And so does your privacy.