Lupus
What research knows about lupus 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 lupus
ANA, anti-dsDNA, anti-Ro, anti-La, anti-RNP, anti-Sm, antiphospholipid antibodies, C3 and C4 at baseline
at baseline
guidelineBlood cholesterol and glucose (cardiovascular risk check)
at least once a year
guidelineRoutine labs in inactive disease: blood count, ESR, CRP, albumin, creatinine or eGFR, urinalysis, urine protein/creatinine ratio
At 6–12 months intervals
guidelineProtein/creatinine ratio, C3, C4, anti-dsDNA, urine microscopy and blood pressure in lupus nephropathy
at least every 3 months for the first 2–3 years
guideline
What sharing it is worth
$118
per licence for a complete story and one year of these records, $103 to $1,273
- Your health story$23how
- Lab resultsx1$0.24how
- Repeated lab resultsx7$1.14how
- Rarity premium (rare)x2.88how
- Richness premium (2 kinds of data linked)x1.67how
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 lupus have been paid for sharing
Published payments for a research interview or survey about it. What patients are paid for research
Lupus
$60
Systemic lupus erythematosus patients (non-Caucasian), 30-minute online survey
Rat Race Rebellion, 2025source