Registry Data in Action

What is the FSR Patient Registry?

FSR Patient Registry is an IRB-approved collection of longitudinal data that is self-reported by individuals impacted by sarcoidosis.

Participants provide information about their disease experience including:

• Demographics and socioeconomics
• Disease information, such as year of diagnosis or initial symptoms, impacted organs, test results, and medications.
• Validated quality of life measures such as the Sarcoidosis Health Questionnaire and PROMIS
• New sarcoidosis manifestations, medications, hospitalizations, and employment and insurance changes (gathered every year)
• Some health records are also available based on the USCDI data standards

The FSR Patient Registry currently has over 7,000 individuals enrolled, with a comprehensive growth plan that addresses both diversifying the types of patients enrolled (acute v. chronic patients, expanding our demographic diversity, etc.) as well as increasing the frequency of longitudinal updates by registry members.

What is the Purpose of the FSR Patient Registry?

The objectives of the FSR Patient Registry are to:

• Stimulate hypothesis-driven clinical research and new drug development among academic and industry partners by making available a large longitudinal set of aggregated de-identified data on sarcoidosis patients interested in participating in clinical trials;
• Enhance the understanding of the variability, progression, and natural history of sarcoidosis with the ultimate goal of better guiding and assessing therapeutic intervention;
• Provide the sarcoidosis medical community with recommendations for monitoring patients and to provide reports on patient outcomes to help optimize patient care;
• Connect interested patients to IRB-approved research opportunities.

Using FSR-SARC Data

Investigators and clinicians may request de-identified data to support research efforts to expand the knowledge base on sarcoidosis. Requests for registry data undergo a thorough review for scientific merit and to avoid duplicative projects.

The request and review process can take between four to eight weeks. If the application is approved, data is securely delivered to the researcher after all regulatory requirements are met.

Researchers who receive registry data are encouraged to present their findings to the larger sarcoidosis community at professional conferences as well as through dissemination in peer-reviewed journals.

If you have any data request questions, please contact registry@stopsarcoidosis.org.