Sickle cell disease

What research knows about sickle cell disease 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

7.7 million

People living with sickle-cell disease, worldwide

source

New diagnoses

One every 61 seconds

515,000 a year, worldwide

source

How rare

Common

about 9.7 in 10,000 people

source source source

What patients usually have

The records behind sickle cell disease

Blood count with differential and reticulocytes on hydroxyurea
Repeated lab results
at least every 4 weeks when adjusting dosage
guideline
Urine protein screen
Repeated lab results
annually, beginning by age 10
guideline
Transcranial Doppler (TCD) ultrasound
Scan reports
annually, from age 2 to at least age 16
guideline

What sharing it is worth

$65

per licence for a complete story and one year of these records, $65 to $726

Value your own data

Your health story$23how
Repeated lab resultsx14$1.98how
Scan reportsx1$2.79how
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 sickle cell disease All conditions

Sickle cell disease

What research knows about sickle cell disease 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

7.7 million

People living with sickle-cell disease, worldwide

source

New diagnoses

One every 61 seconds

515,000 a year, worldwide

source

How rare

Common

about 9.7 in 10,000 people

source source source

What patients usually have

The records behind sickle cell disease

Blood count with differential and reticulocytes on hydroxyurea
Repeated lab results
at least every 4 weeks when adjusting dosage
guideline
Urine protein screen
Repeated lab results
annually, beginning by age 10
guideline
Transcranial Doppler (TCD) ultrasound
Scan reports
annually, from age 2 to at least age 16
guideline

What sharing it is worth

$65

per licence for a complete story and one year of these records, $65 to $726

Value your own data

Your health story$23how
Repeated lab resultsx14$1.98how
Scan reportsx1$2.79how
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 sickle cell disease All conditions