Amyloidosis
What research knows about amyloidosis 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
74,000
People with AL amyloidosis worldwide diagnosed in the preceding 20 years, 2018
sourceNew diagnoses
10 and 51 cases per million population
Diagnosed incidence of AL amyloidosis, modelled 2018
sourceWhat patients usually have
The records behind amyloidosis
Cardiac magnetic resonance imaging when paraprotein tests are positive and echocardiography is non-diagnostic
once
guidelineSerum and urine immunofixation electrophoresis and serum free light chains in suspected cardiac amyloidosis
once, at suspicion
guidelineTissue biopsy (fat-pad, bone marrow or endomyocardial) to diagnose AL amyloidosis
once, at diagnosis
guideline
What sharing it is worth
$257
per licence for a complete story and one year of these records, $222 to $3,699
- Your health story$23how
- Scan reportsx1$2.79how
- Lab resultsx1$0.15how
- Pathology reportsx1$3.49how
- Rarity premium (ultra rare)x2.88how
- Richness premium (4 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
Already paid elsewhere
What people with amyloidosis have been paid for sharing
Published payments for a research interview or survey about it. What patients are paid for research
Amyloidosis
$120
Amyloidosis (ATTR-CM or ATTR-PN) patients, 60-minute phone interview
Rat Race Rebellion, 2025source