Registry for people living with sarcoidosis

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This observational study aims to create a longitudinal registry that collects patient-reported outcomes from individuals diagnosed with sarcoidosis. Participants will provide information on demographics, disease symptoms, their diagnostic journey, treatment experiences, and the overall burden of the disease while ensuring their privacy is maintained. The registry will facilitate a better understanding of sarcoidosis and support future research efforts by documenting the natural history of the condition. Participants can voluntarily update their health information annually and may opt out at any time.

Why it matters

Who can join: the full rules

Inclusion Criteria:

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

Exclusion Criteria:

NONE

Where it's running

• Foundation For Sarcoidosis Research
  Chicago, Illinois, United States Recruiting

Study contacts

• Study coordinator: Leslie Serhuck, MD MA Mbioethics
• Email: info@stopsarcoidosis.org
• Phone: 312-341-0500

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

• Two prednisolone tapering plans for people with stable sarcoidosis

  The team will try two different prednisolone tapering plans to see if people with stable sarcoidosis taking 5–10 mg/day can safely cut their dose by at least half.

  Recruiting Royal Brompton & Harefield NHS Foundation Trust · London · NCT07498842

• Immune cells in lung disease and how they could guide immunotherapy

  This project sees if immune cell profiling from blood can explain why people with lung cancer, sarcoidosis, or COPD respond differently to immunotherapy or develop chronic lung inflammation.

  Recruiting Université Catholique de Louvain · Brussels · NCT07384897

• Imaging in Inflammatory Heart Diseases linked to autoimmune disorders

  This study tests how well multimodality imaging (CMR, echocardiography, and PET) detects inflammation in people with suspected inflammatory heart or autoimmune rheumatic diseases.

  Recruiting Assistance Publique - Hôpitaux de Paris · Paris · NCT07077304

• Virtual groups to reduce sarcoidosis-related fatigue

  This project tests whether an 8-week virtual Mindfulness-Based Stress Reduction (MBSR) program can help reduce fatigue and improve anxiety and depression in adults with sarcoidosis compared with a monthly virtual support group.

  Recruiting The Cleveland Clinic · Cleveland, Ohio · NCT07073963

• Counting and classifying inflammatory cells in uveitis with OCT

  This project will try to use high-resolution OCT scans to count and categorize inflammatory cells and proteins in people with anterior uveitis and related eye inflammation.

  Recruiting Oregon Health and Science University · Portland, Oregon · NCT07065747

• Comparing yoga and physiotherapy for sarcoidosis treatment

  This study is testing whether yoga or traditional physiotherapy helps people with sarcoidosis improve their lung function and feel better overall.

  Recruiting Saglik Bilimleri Universitesi · Istanbul, Maltepe · NCT06848608

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.