ALS
What research knows about ALS comes from people who live with it. Here is how many do, what records they usually have, and what sharing yours is worth.
What patients usually have
The records behind ALS
Cognitive and behavioural assessment
at diagnosis, and if there is concern about cognition and behaviour
guidelineMultidisciplinary team (MND clinic) assessment letters
tailored to the person's symptoms and needs
guidelineWeight, diet, nutrition and swallowing assessment
at diagnosis and at multidisciplinary team assessments
guidelineRespiratory function monitoring results
tailored to symptoms and needs (multidisciplinary team assessments)
guideline
What sharing it is worth
$200
per licence for a complete story and one year of these records, $174 to $2,635
- Your health story$23how
- Doctor's lettersx2$6.07how
- Lab resultsx2$0.42how
- 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