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

NCT ID: NCT06234384

Last Updated: 2025-09-19

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Total Enrollment

6833 participants

Study Classification

OBSERVATIONAL

Study Start Date

2013-07-31

Study Completion Date

2033-07-31

Brief Summary

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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.

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Detailed Description

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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.

Conditions

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Sarcoidosis

Study Design

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Observational Model Type

OTHER

Study Time Perspective

PROSPECTIVE

Interventions

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Sarcoidosis diagnosis

Participants have been diagnosed with sarcoidosis.

Intervention Type OTHER

Eligibility Criteria

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Inclusion Criteria

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

Exclusion Criteria

NONE
Minimum Eligible Age

7 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

Yes

Sponsors

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Foundation for Sarcoidosis Research

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Locations

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Foundation For Sarcoidosis Research

Chicago, Illinois, United States

Site Status RECRUITING

Countries

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United States

Central Contacts

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Leslie Serhuck, MD MA Mbioethics

Role: CONTACT

[email protected]
312-341-0500

Tricha Shivas, MBe

Role: CONTACT

[email protected]
312-341-0500

Facility Contacts

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Tricha Shivas, MBe

Role: primary

[email protected]
312-241-0400

Rebecca A Epstein, MPH

Role: backup

[email protected]
312-340-0500

Other Identifiers

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Pro00008556

Identifier Type: -

Identifier Source: org_study_id

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