Foundation for Sarcoidosis Research Advanced Cures Registry (FSR-SARC Registry)
1 other identifier
observational
6,833
1 country
1
Brief Summary
The goal of the study is to create a longitudinal record of patient reported outcomes for people living with sarcoidosis that maintains privacy. Patients report on the following: demographics, disease symptoms, diagnostic journey, provider experience, disease treatment, and burden of disease. Patients can also link their Electronic Health Records (EHR). The goal is to create a natural history of sarcoidosis, support research, and better understand the needs of the sarcoidosis community.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for all trials
Started Jul 2013
Longer than P75 for all trials
1 active site
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
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Study Timeline
Key milestones and dates
Study Start
First participant enrolled
July 1, 2013
CompletedFirst Submitted
Initial submission to the registry
January 16, 2024
CompletedFirst Posted
Study publicly available on registry
January 31, 2024
CompletedPrimary Completion
Last participant's last visit for primary outcome
June 1, 2033
ExpectedStudy Completion
Last participant's last visit for all outcomes
July 1, 2033
September 19, 2025
September 1, 2025
19.9 years
January 16, 2024
September 15, 2025
Conditions
Outcome Measures
Primary Outcomes (1)
Completed participation in baseline survey
Baseline survey completion
If a survey question is completely blank, a query can be sent to request the subject to complete the section. Subjects will be contacted only twice to attempt to resolve an issue. The timeframe from time to event outcome shall not exceed 6 months.
Interventions
Participants have been diagnosed with sarcoidosis.
Eligibility Criteria
Any adult or child (with a parent or legal guardian's assent) who has been given the diagnosis of sarcoidosis (including juvenile sarcoidosis or Blau Syndrome), and who are able to understand the consent form explaining the risks and benefits of participation.
You may qualify if:
- English speaking
- Consent
- Sarcoidosi diagnosis -
You may not qualify if:
- NONE
Contact the study team to confirm eligibility.
Sponsors & Collaborators
Study Sites (1)
Foundation For Sarcoidosis Research
Chicago, Illinois, 60654, United States
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Central Study Contacts
Study Design
- Study Type
- observational
- Observational Model
- OTHER
- Time Perspective
- PROSPECTIVE
- Target Duration
- 1 Year
- Sponsor Type
- OTHER
- Responsible Party
- SPONSOR
Study Record Dates
First Submitted
January 16, 2024
First Posted
January 31, 2024
Study Start
July 1, 2013
Primary Completion (Estimated)
June 1, 2033
Study Completion (Estimated)
July 1, 2033
Last Updated
September 19, 2025
Record last verified: 2025-09
Data Sharing
- IPD Sharing
- Will not share
All patient data is de-identified, researchers can request access to de-identified data only.