Haemophilia
What research knows about haemophilia comes from people who live with it. Here is how many do, what records they usually have, and what sharing yours is worth.
New diagnoses
No published yearly count in the evidence yet.
What patients usually have
The records behind haemophilia
Annual musculoskeletal and overall health assessment
at least annually
guidelineBleed log documented in real time and reviewed at least annually
documented in real time, reviewed at least annually
guidelineInhibitor screening in newly diagnosed hemophilia A
at least every 6 to 12 months, then annually
guideline
What sharing it is worth
$186
per licence for a complete story and one year of these records, $161 to $2,466
- Your health story$23how
- Health questionnairesx1$1.86how
- Symptom diaryx1$2.33how
- Repeated lab resultsx2$0.27how
- 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 haemophilia have been paid for sharing
Published payments for a research interview or survey about it. What patients are paid for research
Haemophilia
$120
Hemophilia A patients and caregivers, 60-minute phone interview
Rat Race Rebellion, 2025source