Foundation for Sarcoidosis Research Advanced Cures Registry (FSR-SARC Registry)
Foundation for Sarcoidosis Research
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.
Description
Participants review a document, Understanding Your Participation, and check boxes on the Participant Informed Consent document that confirms they understand the risks/benefits of participation (or Assent if the patient is a minor age 7-18), they create an online account, and then are asked to complete the baseline survey questionnaire. Participants confirm they understand that their participation is completely voluntary, that their identifying information will be secured and encrypted, their private health information will be stored separately in a secure database. Their private information wi…
Eligibility
- Age range
- 7+ years
- Sex
- All
- Healthy volunteers
- Yes
Inclusion Criteria: 1. English speaking 2. Consent 3. Sarcoidosi diagnosis - Exclusion Criteria: NONE
Interventions
- OtherSarcoidosis diagnosis
Participants have been diagnosed with sarcoidosis.
Location
- Foundation For Sarcoidosis ResearchChicago, Illinois