Ehlers-Danlos syndrome
What research knows about Ehlers-Danlos syndrome 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 Ehlers-Danlos syndrome
Generalized Joint Hypermobility 5-Point Questionnaire (5PQ)
used at diagnosis when the Beighton score is 1 point below the cutoff
guidelineBeighton score (generalized joint hypermobility examination)
required for the clinical diagnosis of hypermobile EDS (Criterion 1)
guidelineCOL5A1 and COL5A2 gene test report (classical EDS)
once, to confirm a clinical diagnosis
guidelineEchocardiogram report (mitral valve prolapse, aortic root dilatation)
as a criterion for hypermobile EDS diagnosis (systemic manifestation feature)
guideline
What sharing it is worth
$273
per licence for a complete story and one year of these records, $237 to $3,931
- Your health story$23how
- Health questionnairesx1$1.86how
- Doctor's lettersx1$3.49how
- Lab resultsx1$0.24how
- Scan reportsx1$2.79how
- Rarity premium (rare)x2.88how
- Richness premium (5 kinds of data linked)x3how
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