PKU Patient Registry
The PKU Patient Registry is a secure database that provides a way to collect information from many different people with PKU. The information can be entered into the database by completing several different online surveys that are filled out at your own pace one at a time. These surveys are intended to gather information about many different aspects of PKU including details about diagnosis, diet, medication, developmental milestones, behavior and other clinical symptoms. The information that is entered will remain private and will not be linked to your name or any other identifiers. You will have the ability to view what you have entered and update your information regularly.
Learn more at pku.iamrare.org.
WHO CAN I CONTACT IF I HAVE ANY QUESTIONS
Please contact Eileen Blakely, the registry coordinator at firstname.lastname@example.org or by calling 715-493-0074 if you have questions or would like additional information.
Click here to read about the new and exciting partnership between NPKUA and BabyGenes that will provide a unique opportunity for individuals with PKU.