Systemic sclerosis (scleroderma)
What research knows about systemic sclerosis (scleroderma) comes from people who live with it. Here is how many do, what records they usually have, and what sharing yours is worth.
Living with it
0.9 to 37.9 per 100,000
Systemic sclerosis prevalence across published studies worldwide
sourceNew diagnoses
0.05 to 4.1 per 100,000 person-years
Systemic sclerosis incidence across published studies worldwide
sourceWhat patients usually have
The records behind systemic sclerosis (scleroderma)
HRCT and pulmonary function tests to detect lung disease in juvenile systemic sclerosis
PFT at least 6 monthly
guidelineRepeat pulmonary function tests in confirmed SSc interstitial lung disease
every 3 to 6 months in the first 3 to 5 years, then every 6 to 12 months
guidelineAnnual screening for pulmonary arterial hypertension (lung function, echocardiography, NT-proBNP)
annually
guideline
What sharing it is worth
$178
per licence for a complete story and one year of these records, $153 to $2,346
- Your health story$23how
- Scan reportsx1$2.79how
- Repeated lab resultsx4$0.47how
- Rarity premium (rare)x2.88how
- Richness premium (3 kinds of data linked)x2.33how
A benchmark from published prices, not a promise: contributors earn a share each time a licence includes their data. How the benchmark works · What health data sells for
Already paid elsewhere
What people with systemic sclerosis (scleroderma) have been paid for sharing
Published payments for a research interview or survey about it. What patients are paid for research