Registry for people living with sarcoidosis
Foundation for Sarcoidosis Research Advanced Cures Registry (FSR-SARC Registry)
Foundation for Sarcoidosis Research · NCT06234384
This study is collecting health information from people with sarcoidosis to better understand the condition and help future research.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 6833 (estimated) |
| Ages | 7 Years and up |
| Sex | All |
| Sponsor | Foundation for Sarcoidosis Research (other) |
| Locations | 1 site (Chicago, Illinois) |
| Trial ID | NCT06234384 on ClinicalTrials.gov |
What this trial studies
This observational study aims to create a longitudinal registry that collects patient-reported outcomes from individuals diagnosed with sarcoidosis. Participants will provide information on demographics, disease symptoms, their diagnostic journey, treatment experiences, and the overall burden of the disease while ensuring their privacy is maintained. The registry will facilitate a better understanding of sarcoidosis and support future research efforts by documenting the natural history of the condition. Participants can voluntarily update their health information annually and may opt out at any time.
Who should consider this trial
Good fit: Ideal candidates for this study are English-speaking individuals who have been diagnosed with sarcoidosis.
Not a fit: Patients who do not speak English or do not have a diagnosis of sarcoidosis will not benefit from this study.
Why it matters
Potential benefit: If successful, this registry could enhance understanding of sarcoidosis and improve patient care and treatment options.
How similar studies have performed: Other observational studies have successfully utilized patient registries to improve understanding and treatment of chronic conditions, indicating a promising approach.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: 1. English speaking 2. Consent 3. Sarcoidosi diagnosis - Exclusion Criteria: NONE
Where this trial is running
Chicago, Illinois
- Foundation For Sarcoidosis Research — Chicago, Illinois, United States (RECRUITING)
Study contacts
- Study coordinator: Leslie Serhuck, MD MA Mbioethics
- Email: info@stopsarcoidosis.org
- Phone: 312-341-0500
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions: Sarcoidosis