rules for participation

Effective as of: October 5, 2022

The following are the Rules for Participation for the Autoimmune Registry, a patient registry operated by Autoimmune Registry Inc., ARI, a 501(c)3 non-profit charity.

1. ARI is a non-profit charity that collects patient data that helps us provide patients with information about their health conditions and helps medical researchers determine if a patient is eligible for their research.

2. Your participation in the Registry is voluntary. If you do not supply a valid e-mail address, your data will be deleted.

3. ARI separates your data into 2 parts, Personally Identifiable Data (PID) and Non-Identifiable Data (NID).

   a) Your PID is never sent to anyone. ARI uses it to contact you if a researcher discovers you are eligible for a study. If you want to participate, you can contact the researcher yourself. We do not give the researcher your data unless you ask us in writing to do so.

   b) Your NID data is put in a database that can be queried by researchers. For example, if you have lupus and a researcher is looking for patients with lupus, the researcher might discover we have 45 patients with lupus. You would be one of those people and we would contact you to tell you about the research. The researcher only knows that 45 people have lupus. The researcher never finds out you are one of those 45 people unless you decide to contact the researcher yourself.

4. PID will be shared by the Autoimmune Registry only as described in Section 5. However, although we make every effort to preserve user privacy, you are hereby notified that we will disclose Personal Information if required by law to do so.

5. NID may be reported in aggregate form to researchers, other participants, and other third parties with whom ARI has established a formal relationship that includes a Data Usage Agreement. A list of the organizations that ARI has a formal relationship with can be obtained by emailing aaron@autoimmuneregistry.org.

6. ARI is not a covered entity as defined by the Health Insurance Portability and Accountability Act (HIPAA) and your data is not protected by HIPAA. However, we use HIPAA and other patient privacy laws as general guidelines when we set up protections for your PID and NID.

7. By using this website and the ARI Data Collection System, you understand and consent to the collection, processing, transfer and use of your PID and NID in the manner and for the purposes set forth in our Data Privacy and Governance Policy.

8. You may ask for your PID to be removed from the registry at any time. ARI will remove your PID within 1 month. To voice any objections, to request the deletion, modification of your PID, or to request a copy of your existing data, please contact ARI via our contact form or email us at aaron@autoimmuneregistry.org.

9. Your PID will be maintained in ARI’s database for a period of 30 years, unless you contact us to indicate otherwise. After that period, we will ask you for additional consent to continue to use your data. If you do not provide additional consent, your PID will be deleted and your NID will no longer be linked to any information that can be traced to you.

10. ARI does not use the data to predict or profile your health or behavior. However, ARI does intend on publishing statistics that show aggregate trends for autoimmune diseases. We may publish data, such as symptoms, medications, or comorbidities, specific to your autoimmune disease. If you do not consent to having your statistic included in our analyses, please refer to Section 8.

11. Nothing that is published on ARI’s website, social media accounts, or newsletters should be construed as medical advice, recommendations, or predictions of your health outcome. ARI merely publishes statistical summaries based on available data.

12. While ARI exercises all due caution to protect your privacy, we will not be held responsible for parties who illegally access any information obtained through the website or who intercept or access transmissions or private communications.