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Recruiting

NCT Number: NCT06234384

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

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.

Recruiting

Interested in participating?

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Key information

Conditions

Sarcoidosis Hemic and Lymphatic Diseases Hypersensitivity Hypersensitivity, Delayed Immune System Diseases Lymphatic Diseases Lymphoproliferative Disorders

Age range

7 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

About this study

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.

Who can participate

Healthy volunteers accepted: Yes

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

  • English speaking
  • Consent
  • Sarcoidosi diagnosis -

Exclusion criteria

NONE

Treatment and study plan

Sarcoidosis diagnosis

Other

Participants have been diagnosed with sarcoidosis.

Primary outcomes

  1. Completed participation in baseline survey

    Time frame: If a survey question is completely blank, a query can be sent to request the subject to complete the section. Subjects will be contacted only twice to attempt to resolve an issue. The timeframe from time to event outcome shall not exceed 6 months.

    Baseline survey completion

Study contacts

Contact information is provided by the study sponsor or research team.

Leslie Serhuck, MD MA Mbioethics

CONTACT

[email protected]

312-341-0500

Tricha Shivas, MBe

CONTACT

[email protected]

312-341-0500

Sponsors and collaborators

Lead sponsor

Foundation for Sarcoidosis Research

Other

Registry information

Important dates

Study start
2013
Primary completion
2033
Study completion
2033
First posted
Jan 31, 2024
Registry last updated
Sep 19, 2025

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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