Foundation for Sarcoidosis Research Advanced Cures Registry (FSR-SARC Registry)

Last updated: January 29, 2024
Sponsor: Foundation for Sarcoidosis Research
Overall Status: Active - Recruiting

Phase

N/A

Condition

Sarcoidosis

Treatment

Sarcoidosis diagnosis

Clinical Study ID

NCT06234384
Pro00008556
  • Ages > 7
  • All Genders
  • Accepts Healthy Volunteers

Study Summary

The goal of the study is to create a longitudinal study 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. The goal is to create a natural history of sarcoidosis, support research, and better understand the needs of the sarcoidosis community.

Eligibility Criteria

Inclusion

Inclusion Criteria:

  1. English speaking
  2. Consent
  3. Sarcoidosi diagnosis -

Exclusion

Exclusion Criteria: NONE

Study Design

Total Participants: 6647
Treatment Group(s): 1
Primary Treatment: Sarcoidosis diagnosis
Phase:
Study Start date:
July 01, 2013
Estimated Completion Date:
July 31, 2033

Study 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 will never be shared with other people, unless its required by law. The registry may share de-identified information with researchers and other databases. Their personal information will be protected and not shared. They may choose to stop their participation at any time by contacting FSR. They are not required to fill out all the questions and can leave any unanswered. They will be contacted by the registry once a year to update or correct their health information. They can choose to be contacted by FSR if a study becomes available that they may wish to know more about.

Connect with a study center

  • Foundation For Sarcoidosis Research

    Chicago, Illinois 60654
    United States

    Active - Recruiting

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