Recruiting PKU Studies
Thank you for your interest in learning about ongoing PKU studies!
To support PKU research, NPKUA helps to connect community members who are interested in participating in research with active PKU studies through the PKU Patient Registry. Featured studies need to undergo a rigorous approval process before sharing with the PKU community. If you would like to receive email notifications for recruiting studies, you can do so through the PKU Patient Registry. If you have any questions, please email registry@npkua.org.
Please see the list of approved PKU studies that are actively recruiting:
Development of Novel Psychological Assessment Tools and Anxiety Intervention for PKU: Intervention Trial
Study Contact(s)
Eligibility Criteria
- Adolescents (10-17 years old) with PKU experiencing difficulties with anxiety, stress and/or depression
The Impact of Phenylalanine Elevations on Metabolic, Cognitive, and Neural Functioning in Adults Heterozygous for Phenylketonuria (PKU)
Study Contact(s)
Eligibility Criteria
- Adults (ages 18-60 years old) who are carriers of the PKU gene (for example, a parent of someone with PKU)
A Mixed Methods Approach to Patient and Caregiver Experience with Reproductive Healthcare for PKU
Study Contact(s)
Eligibility Criteria
- Female with a diagnosis of PKU, aged 18 years or older
- Caregiver to a female with PKU aged 18 years or older
- Take the study survey here: https://redcap.link/PKUSRH
Making the invisible, visible: creating a PKU-specific patient reported outcome and experience measure, the PKU-PROEM
Study Contact(s)
Eligibility Criteria
- Teenagers with PKU (12 – 17 years old)
- Adults with PKU 18+
- Caregivers of children with PKU (<12 years old)