Information Gathering Tool

Use this form to help gather your informaiton to be entered into the Regisitry:  Click here for tool

PKU Patient Registry Overview Video

Learn how easy it is to navigate through the PKU Patient Registry.



May Is PKU Awareness Month

May 2017 is an exciting month for the NPKUA. As we focus on PKU Awareness Month we challenge the PKU Community to enroll in the PKU Patient Registry and for those who have already registered we encourage you to complete surveys. The PKU Patient Registrylaunched in January and we have already over 500 registrants. We would like to reach 700 by May 31, 2017. By participating in the registry you can also see how your experiences and data compare with others through instant reporting tools. Your information can accelerate research, it starts with you!

To find out more about PKU Awareness Month how you can get involved click here.

Getting Started On Surveys - Registry Resources Available!

Need help getting started on your surveys? Would you like to learn more about the information that will be collected in the registry before you get started? Check out the NPKUA registry page where you will find many resources for your use. Print out a step by step guide to help you get started. Watch a video that shows how to navigate within the registry and provides an overview of each survey. Check out a written guide that provides information on each survey including the information that it will collect and about how long it takes to complete. Still have questions? No problem, contact the PKU Registry coordinator at


See what experts say about the PKU Patient Registry

“I urge everyone with PKU to join the PKU Registry. The Registry offers to be the first time that all of us - people with PKU and their families, doctors, dieticians, everyone - can really learn about PKU and how treatment is going so that better and easier ways of treating PKU can come along.” – Harvey Levy, MD, Boston Children’s