PKU Adult Program
The PKU Adult Program is a new initiative of the National PKU Alliance that provides information and support for adults living with PKU. Adults with PKU face many challenges. The program provides a one-stop resource for adults seeking to improve their quality of life. This is the only program composed of a national network of adults with PKU, their families, clinicians, and industry leaders to address the variety of needs of adults with PKU.
ADULTS WITH PKU: THE UNIVERSITY OF WISCONSIN MADISON NEEDS YOUR HELP!!
You are invited by the Biochemical Genetics Program at UW Madison to complete a survey exclusively for adults with PKU. This questionnaire is for research and your participation is voluntary. Whether you are on diet or not, your input is important to us! The purpose of this study is to learn more about the needs of adults with PKU. Results from this survey will help clinicians better understand adults with PKU. We need to know if adults are following the PKU diet, their medical concerns related to PKU and their views about follow-up at a PKU clinic. It will take about 10 minutes to answer all the questions. If you’d rather not answer one or more of the questions, that is OK too. The survey is anonymous. We will not collect your name or any other information that could identify you. Your answers will not be given to your PKU clinic and filling out this survey will not affect the care you receive from your clinic. All the answers that we receive will be compiled together. Results will be presented at PKU meetings and may be included in a paper in a medical journal. If you have any questions or comments about this survey, please contact Sandy van Calcar, Metabolic Dietitian and Principal Investigator for this study.
Thank you for taking the time to fill out this survey.
Sandy van Calcar, Senior Metabolic Dietitian
The Biochemical Genetics Program, University of Wisconsin in Madison, Wisconsin
To fill out the survey…
Click the Survey Monkey link listed below
Directions are given on the survey.
The Adult Program consists of several different initiatives.
Adult PKU Clinic Grants
Clinics - Learn more about applying for a grant from the NPKUA to enhance your efforts in providing outreach and support to adults living with PKU as well as locating patients lost to follow-up. Click here for more information.
Clinical Reference Manual
One of the long term goals is to support the creation of a reference manual meant to target any practitioner who may be exposed to/see adult patients with PKU, but who does not perform metabolic patient care on a regular basis.
Strict metabolic control prior to conception and during pregnancy significantly improves the outcome of babies born to women with PKU. Despite this knowledge, babies with variations of Maternal PKU Syndrome continue to be born at an alarming rate. The PKU Adult Program aims to aggressively intervene and assist with the broad “issue” of Maternal PKU through a Maternal PKU Mentor Program that will be implemented in the summer of 2012 as well as an assistance program to help woman in need.
Social Support Opportunities
Supporting Adults Returning to Treatment
A short booklet has been developed to help adults with PKU return to diet. This booklet, created by adults with PKU, will offer information and short simple notes to help adults on their journey. Click here to view a PDF of the PKU Adult Booklet.
There are approximately 200 metabolic clinics around the United States that provide medical treatment and services for PKU. To find a clinic near you, go to our Clinic Locator on the homepage and click on your state.
Plans are underway to create an adult focused website that will serve as the virtual home of the program and a community base for adults with PKU. Conceptually developed by adults with PKU, and specifically geared to the education and social support of PKU Adults, the website will be the only one of its kind. The hope is that this platform will also serve as an educational center for all aspects of adult PKU with educational webinars, short instructional videos, and social networking capabilities.
Access to Treatment
Many adults with PKU face issues around insurance reimbursement for the medical foods necessary to treat PKU. These needs will be addressed through a larger NPKUA insurance obmbudsman initiative that includes an insurance coverage guide and trained advocates to assist adults with insurance denials.
Learn more about the NPKUA 2010 Adult Summit by clicking here.