RECRUITING

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

Conditions

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

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.

Official Title

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

Quick Facts

Study Start:2013-07
Study Completion:2033-07
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT06234384

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:7 Years
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:Yes
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. 1. English speaking
  2. 2. Consent
  3. 3. Sarcoidosi diagnosis -
  1. Pregnancy or breastfeeding
  2. Severe psychiatric disorders
  3. Active substance abuse
  4. Unstable medical conditions
  5. Inability to comply with study requirements

Contacts and Locations

Study Contact

Leslie Serhuck, MD MA Mbioethics
CONTACT
312-341-0500
info@stopsarcoidosis.org
Tricha Shivas, MBe
CONTACT
312-341-0500
tricha@stopsarcoidosis.org

Study Locations (Sites)

Foundation For Sarcoidosis Research
Chicago, Illinois, 60654
United States

Collaborators and Investigators

Sponsor: Foundation for Sarcoidosis Research

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2013-07
Study Completion Date2033-07

Study Record Updates

Study Start Date2013-07
Study Completion Date2033-07

Terms related to this study

Additional Relevant MeSH Terms

  • Sarcoidosis