Actively Recruiting
Foundation for Sarcoidosis Research Advanced Cures Registry (FSR-SARC Registry)
Led by Foundation for Sarcoidosis Research · Updated on 2025-09-19
6833
Participants Needed
1
Research Sites
4 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
This research aims to collect long-term patient-reported information from people living with sarcoidosis while ensuring privacy. The study focuses on gathering data about demographics, symptoms, diagnosis experiences, healthcare providers, treatments, and the overall impact of the disease. It also supports research by creating a natural history of sarcoidosis and understanding the community's needs. Participants begin by reviewing an information document and providing consent or assent if they are minors aged 7 to 18. They create an online account and complete a baseline survey about their health and disease experience. Personal information is kept secure and separate from private health data, with only de-identified information shared for research. Participants receive annual contact to update health information and may opt to hear about new studies. During the study, participants provide data through surveys and may link their electronic health records. The main outcome is completing the baseline survey, with follow-ups to ensure data completeness. Participation is voluntary, and participants can skip questions or stop at any time. The study spans multiple years, continuing to gather updates to advance understanding of sarcoidosis.
CONDITIONS
Brief Title
Foundation for Sarcoidosis Research Advanced Cures Registry (FSR-SARC Registry)
Who Can Participate
Eligibility Criteria
You may qualify if you...
- English speaking
- Consent provided
- Diagnosed with sarcoidosis
- Age 7 years or older
You will not qualify if you...
History of severe allergic reactions to study medication Currently pregnant or breastfeeding Recent participation in another clinical trial within the last 30 days Presence of uncontrolled medical conditions that could affect safety
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
Duration - N/A
Participants have been diagnosed with sarcoidosis.
Duration - Ongoing annual updates for up to 10 years
Participants complete a baseline survey and update their health information once a year. They may also choose to receive notifications about other studies.
1 baseline survey and annual follow-up surveys
Trial Site Locations
Total: 1 location
1
Foundation For Sarcoidosis Research
Chicago, Illinois, United States, 60654
Actively Recruiting
Research Team
L
Leslie Serhuck, MD MA Mbioethics
T
Tricha Shivas, MBe
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
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