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 eileen.blakely@npkua.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.

Who can participate

If you have PKU or if you are the parent or legal guardian of a person with PKU we invite you to participate in the PKU Patient Registry. Information can be entered by a parent or guardian or by the person with PKU.

Why is the registry important

Patient registries have been shown to help speed the development of better treatments and ultimately improve patient outcomes. The PKU Patient Registry will:

  • Provide new insights into the disease and identify areas for additional study
  • Facilitate partnerships with university researchers, medical food and pharmaceutical companies
  • Guide the development of standards of care across the globe.
  • Generate a greater number of PKU clinical trials
  • Allow participants to store and access their PKU medical information in one place.
  • Allow patients to be involved in improving the future of PKU

How can i join the pku REGISTRY

Visit pku.iamrare.org to sign up and make a difference!

 

Registry Testimonials

Click here to see what other people are saying about the PKU Patient Registry.

FAQ'S

Procedure for Registering
Survey Descriptions
Information Gathering Tool
General Registry Overview - Video
Completing The First Three Surveys - Video

SHOW YOUR SUPPORT - CREATE A CUSTOM FRAME FOR FACEBOOK

Once you enroll at pku.iamrare.org, come back to create a custom picture frame to post on Facebook to show your support for the PKU Patient Registry by clicking here.

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