Sarcoidosis: Your Tests and Experience as Research Data

Every figure in this guide comes from a published source, linked where it appears and kept in CureCircle's evidence base with the source's own words. It is not medical advice. Read on 7 November 2026.

Sarcoidosis is unpredictable. For some people it clears by itself; for others it lingers in the lungs, eyes, skin, heart or nerves for years. Doctors still cannot say well in advance which course a person will take, or which treatment suits whom. The tests from diagnosis onwards, and the person's own account of fatigue, breathlessness and treatment, are what research on sarcoidosis needs to answer that.

How many people live with it

A study of adults in England found that sarcoidosis prevalence increased from 167 to 230 per 100,000 individuals between 2003 and 2023, with new diagnoses at 7.73 per 100,000 person-years in 2023. In Sweden, the prevalence was 160 per 100,000.

The records worth keeping

The American Thoracic Society's guideline on sarcoidosis describes the tests that leave records:

• Tissue for diagnosis: often EBUS-guided lymph node sampling, with a pathology report.
• Baseline screening for other organs: a baseline ECG for the heart, a baseline eye examination, and blood tests for calcium and kidney function.

Chest scans and lung function tests over the years show how the disease behaved. If you do not have them, ask your respiratory service for a copy.

What sharing it is worth

CureCircle values every contribution with a public benchmark built from what health data has sold for. A complete sarcoidosis story with the records the guideline lists comes to about $97 per licence on the benchmark today. Every line and its source is on the sarcoidosis page.

A licence is not a one-off sale: the same de-identified story can be licensed to several research teams, and you earn a share each time.

How to share it

You start by writing what you live with in your own words; a few quick questions follow, then an AI interviewer asks about the details only you know, and you rate every treatment you tried. You can add scan and biopsy reports, blood results and clinic letters as PDFs or photos, and the AI reads them into your own medical file. Before anything is shared, you read the de-identified summary and decide.

Start your story, or read what your health data is worth first.