We Need Your Help With New Growth Charts For PWS

Dr. Merlin Butler, chairperson of our PWSA (USA) Scientific Advisory Board, is working with us to create a PWS growth chart for ages 3 – 18. We obtained a grant from Pfizer to create this growth chart and reproduce our PWS growth hormone booklet.  Under the grant, both will be distributed to all pediatric endocrinologists around the nation. Dr. Butler helped create the infant growth chart that is in our PWSA (USA) growth hormone booklet and was published in the Pediatrics journal.

Criteria for the information needed:

  • NOT on growth hormone treatment, or measurements taken prior to growth hormone treatment started.
  • NOT enrolled in the rare disease consortium — sites at Florida, Vanderbilt, Kansas or Irvine, California (He has the data on these enrolled individuals.)
  • CONFIRMED to have Prader-Willi syndrome by genetic testing.
  • Height, weight, and/or head circumference data (single measurements or multiple measurements would be helpful

If you think you might have records that might at all be helpful, please contact Dr. Butler at mbutler4@kumc.edu

This important project will be helpful to endocrinologists and pediatricians around the nation for years to come. It is wonderful to know that we have so many families willing to help advance medical care and research. Thank you!

Janalee Heinemann

 PWSA (USA) Director of Research & Medical Affairs

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About pwsatoday

PWSA (USA) is an organization of families and professionals working together to raise awareness, offer support, provide education and advocacy, and promote and fund research to enhance the quality of life of those affected by Prader-Willi syndrome.
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2 Responses to We Need Your Help With New Growth Charts For PWS

  1. Marguerite Hughes says:

    Hello

    Sounds like a great initiative!

    Can I just check that you’re looking for records from anywhere – e.g. not just US? If so I will post this on the Irish PWS Association facebook page.

    Best wishes, Marguerite

    Date: Tue, 15 Oct 2013 18:18:11 +0000 To: marguerite_hughes@hotmail.com

  2. Jo Davies (Prader-Willi Syndrome Assoc NZ) says:

    Hi, do you know if the growth data needs to be from patients within the USA? Thanks

    Jo Davies

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