Foundation for Sarcoidosis Research Advanced Cures Registry (FSR-SARC Registry)
ConditionSarcoidosis
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
Age7+
SponsorFoundation for Sarcoidosis Research
About this trial
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.
Eligibility criteria
This trial accepts healthy volunteersQualifiers
English speaking
Consent
Sarcoidosi diagnosis -
Disqualifiers
None
Trial population
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.
Trial design
Design model
Other
Time perspective
Prospective
Treatments tested in this trial
Sarcoidosis diagnosis
Other interventionParticipants have been diagnosed with sarcoidosis.
Treatment groups
No treatment groups listed
Trial outcomes
Primary outcomes
1
Completed participation in baseline survey
Baseline survey completion
Time frame
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.Sponsors and contacts
Click on the lead sponsor to view all of their trials.
Source ClinicalTrials.gov