Huntington's disease
What research knows about Huntington's disease 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
0.48 cases per 100,000 person-years
Pooled incidence of Huntington's disease, studies 2010 to 2022
sourceWhat patients usually have
The records behind Huntington's disease
HTT gene CAG repeat length test report
once, as the genetic diagnosis
guidelineMalnutrition screening (MUST) and weight records
not stated (weight loss over the last 3 to 6 months triggers action)
guidelineSwallowing assessment (speech and language therapist)
regular, throughout the progression of the disease
guideline
What sharing it is worth
$183
per licence for a complete story and one year of these records, $158 to $2,403
- Your health story$23how
- Lab resultsx2$0.42how
- Doctor's lettersx1$3.49how
- Rarity premium (very 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 Huntington's disease have been paid for sharing
Published payments for a research interview or survey about it. What patients are paid for research
Huntington's disease
$120
Huntington's disease patients and caregivers, 60-minute phone interview
Rat Race Rebellion, 2025source