Phenylketonuria (PKU)
Longitudinal, real-world data from adults managing phenylketonuria every day.
What it is
Phenylketonuria demands lifelong dietary control, yet most research still leans on sparse clinic visits. Cureledger builds a continuous, real-world picture of how adults actually manage PKU — what they eat, how their blood-phe responds, and how medical formula fits into daily life.
How we build it
Where the data comes from.
A longitudinal cohort
We are in the process of acquiring an established longitudinal PKU dataset — years of tracked outcomes that give the collection immediate depth.
Real-world data from Phebe
Adults using the Phebe app log phe intake, blood-phe results, meals, and formula adherence as they live — consented, de-identified, and growing every day.
What's in the data
The fields you can work with.
- Daily phe intake
- Milligrams of phenylalanine logged per meal and per day.
- Blood-phe results
- Self-reported and lab blood-phenylalanine measurements over time.
- Food & diet logs
- Meals, low-protein foods, and dietary patterns in daily life.
- Formula adherence
- Medical-formula intake measured against prescribed regimens.
Who it's for
Built for metabolic researchers, medical-food companies, and PKU therapeutics teams — to study adherence, dose-response, and real-world outcomes that clinic data alone can’t show.
Metabolic researchers · medical-food & PKU therapeutics
Living with this condition?
Contribute your data — get the Phebe app.
Track your condition day to day in Phebe and contribute de-identified data on your own terms. You stay in control, and you share in the value it creates.
Get the app
Phebe
The free app for adults managing PKU. Track phe, blood levels, and formula in daily life — and contribute your de-identified data on your own terms.
Researcher or partner?
Tell us what you need — we'll be in touch about access, terms, and timing.