Join the PKU Patient Registry to participate in PKU research to improve the lives of people with PKU and pursue a cure!
PKU Patient Registry
With just one hour of your time each year, you can contribute to research needed to improve the lives of individuals with PKU by participating in the PKU Patient Registry. Individuals with PKU and their family members can share their lived experiences with PKU by completing online surveys in the secure registry platform. Information collected in the registry:
- Provides data for researchers to create new therapies and treatments,
- Influences recommendations for standard of care for PKU,
- Gives a voice to individuals with PKU and their families, and
- Connects PKU researchers with the community to participate in research studies, such as clinical trials for new investigational medications
Anyone is welcome to share their PKU journey to help create a better future for the entire PKU community. For more information about how to register, click here.
For Patients
Get Involved
Information collected during this study may be used to help provide opportunities for patients and researchers to collaborate in the rare disease community.
For Researchers
Drive Research
This is a unique rare disease patient registry. Are you interested in using our data to further your rare disease research?