Systemic Sclerosis (Scleroderma): Why Your Records Are Worth More to Research

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.

Systemic sclerosis, or scleroderma, is rare and varied: it can tighten the skin, narrow blood vessels in the fingers, and affect the lungs, heart, gut and kidneys. Because few people have it, researchers struggle to gather enough patients to learn which treatments help and how the disease unfolds. Each person's long record of tests, and their account of what living with it is like, is worth more to research for exactly that reason.

How many people live with it

A 2026 global review found that prevalence ranged from 0.9 to 37.9 per 100,000 and incidence from 0.05 to 4.1 per 100,000 person-years, depending on the country and the study. That makes it a rare disease by the European definition.

The records worth keeping

The British Society for Rheumatology's 2024 guideline describes the regular tests that leave records:

• Lung function tests: in confirmed lung involvement, repeated every 3 to 6 months in recently diagnosed SSc and every 6 to 12 months after that.
• A lung CT scan and lung function tests to detect presence and severity of lung disease.
• Yearly screening for pulmonary hypertension: on an annual basis, typically with lung function tests, an echocardiogram and an NT-proBNP blood test.

Years of these results show how the disease moved and how treatment held it. If you do not have them, ask your rheumatology 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. Because systemic sclerosis is rare, a complete story with the records the guideline lists comes to about $178 per licence on the benchmark today, more than a common condition with the same records. Why rare disease data is worth more. Every line and its source is on the systemic sclerosis 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.

People with scleroderma are also paid for their time directly: a published listing offered $125 for a 60-minute phone interview.

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 lung function results, scan and echo reports 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.