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

F

Foundation for Sarcoidosis Research (FSR)

Status

Enrolling

Conditions

Sarcoidosis

Treatments

Other: Sarcoidosis diagnosis

Study type

Observational

Funder types

Other

Identifiers

NCT06234384
Pro00008556

Details and patient eligibility

About

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.

Full 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.

Enrollment

6,647 estimated patients

Sex

All

Ages

7+ years old

Volunteers

Accepts Healthy Volunteers

Inclusion criteria

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

Exclusion criteria

NONE

Trial contacts and locations

1

Loading...

Central trial contact

Leslie Serhuck, MD MA Mbioethics; Tricha Shivas, MBe

Data sourced from clinicaltrials.gov

Clinical trials

Find clinical trialsTrials by location
© Copyright 2024 Veeva Systems