Cystic fibrosis

What research knows about cystic fibrosis 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

38,804

People living with cystic fibrosis in the United States, 2020

source

New diagnoses

One every 3 days

134 a year, Italy

source

How rare

Very rare

about 0.74 in 10,000 people

source source

What patients usually have

The records behind cystic fibrosis

Routine clinic review (adults)
Doctor's letters
every 3 to 6 months as adults
guideline
Cystic-fibrosis-related diabetes test
Repeated lab results
annually from 10 years of age
guideline
Pulmonary monitoring review (adults with lung disease)
Doctor's letters
adults at least every 3 months
guideline

What sharing it is worth

$269

per licence for a complete story and one year of these records, $234 to $3,571

Value your own data

Your health story$23how
Doctor's lettersx7$17how
Repeated lab resultsx1$0.24how
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

Share your story about cystic fibrosis All conditions

Cystic fibrosis

What research knows about cystic fibrosis 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

38,804

People living with cystic fibrosis in the United States, 2020

source

New diagnoses

One every 3 days

134 a year, Italy

source

How rare

Very rare

about 0.74 in 10,000 people

source source

What patients usually have

The records behind cystic fibrosis

Routine clinic review (adults)
Doctor's letters
every 3 to 6 months as adults
guideline
Cystic-fibrosis-related diabetes test
Repeated lab results
annually from 10 years of age
guideline
Pulmonary monitoring review (adults with lung disease)
Doctor's letters
adults at least every 3 months
guideline

What sharing it is worth

$269

per licence for a complete story and one year of these records, $234 to $3,571

Value your own data

Your health story$23how
Doctor's lettersx7$17how
Repeated lab resultsx1$0.24how
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

Share your story about cystic fibrosis All conditions