Patient Registry Data Requests
The Foundation for Sarcoidosis Research Patient Registry, FSR-S.A.R.C. (Sarcoidosis Advanced Registry Cures), is an IRB-approved collection of longitudinal patient data via our on-line state-of-the art patient registry tool, a HIPAA compliant hosting facility that provides a secure environment to protect properly consented de-identified patient information. The registry is designed as an extensive online-based questionnaire that allows for patient and/or patients’ caretakers to enter information on patient demographics, medical history, familial history, organ-specific disease specifics, treatment history, and elements that indicate the burden of the disease on the patient’s quality of life. It is comprised of 87 questions collaboratively developed by the FSR Scientific Advisory Board. Participation requires creation of a patient profile as well as signed consent. It is accessible through the FSR website, although hosted on a contracted third-party highly secured platform. The outreach is global; while currently provided in English, the registry will soon expand to other languages.
The FSR-SARC Registry collects de-identified patient information data into an electronic repository to be available to:
- investigators expanding the knowledge base for sarcoidosis
- clinicians treating patients
- epidemiologists analyzing disease data
- investigators seeking patients for new clinical trials
The objectives of the patient registry include overall, to provide much-needed data in the current vacuum of sarcoidosis research, and specifically 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
- 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.
FSR-S.A.R.C. Patient Registry as a Research Tool
An important resource for clinicians, investigators, and industry, the registry is an invaluable tool for researchers seeking to pursue observational studies about persons with sarcoidosis in the United States and internationally. Requests for registry data undergo a thorough review for scientific merit. This review is completed by the Patient Registry Committee comprised of FSR Scientific Advisory Board members, clinicians, researchers and FSR staff.
The request and review process takes 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 the World Associate of Sarcoidosis and Other Granulomatous Disorders congress and through dissemination in peer-reviewed journals.
Researchers who wish to request registry data for observational studies can complete the formal application and confidentiality-usage agreement below. The application includes instructions regarding the format of the applications, regulatory requirements and other responsibilities for individuals receiving registry data. Variables included in the registry also are available in the link to questionnaire below. If you have any questions please contact us at firstname.lastname@example.org.