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Hyperphagia Biomarkers in Children With PWS: Elizabeth Roof [VIDEO]

This blog contains excerpts from Hyperphagia Biomarkers in Children With PWS, a presentation given by Dr. Elizabeth Roof at the FPWR 2017 conference.

This blog contains excerpts from Hyperphagia Biomarkers in Children With PWS, a presentation given by Elizabeth Roof at the FPWR 2017 conference. You can watch the full presentation by clicking on the embedded video below.

In case you don't have time to watch the full video, we've captured some of the key points in the notes below.

Elizabeth Roof, a senior research specialist from the Vanderbilt Kennedy Center, specializes in psychiatric and behavioral development in people with developmental delays. She is well known and revered by many in the PWS community and has worked with hundreds of families across the country, both in person and over the phone.

In a brief presentation at the FPWR 2017 conference, she spoke about two research efforts currently underway regarding hyperphagia in people with PWS.

Hyperphagia in PWS

Hyperphagia, the clinical term for the excessive hunger of PWS, has several prominent characteristics:

  • Starts gradually
  • Variable
  • Lifelong concern
  • Difficult to measure objectively

Addressing the Measurement Challenge 

Past studies have relied upon parental observations of their children’s hunger and behavior, and the hope is that this study offers a more accurate way to collect objective hyperphagia data about a person’s level of hunger and interest in food.

As Elizabeth notes, even for drug studies, companies are struggling with the idea of, “I’m looking at you and trying to figure out how hungry you are.” It’s not an easy thing to do.

Such objective measures are needed to show how hyperphagia emerges in young children with the goal of determining how it can be stopped.

Eye Tracking and Brain Activity

Both eye tracking and brain activity studies are being used to objectively measure hyperphagia. Subjects are shown pictures of food and non-food, and researchers study where their eyes travel to and how their brains respond.

For both measures:

  • Participation is non invasive
  • Subjects look at three categories of photos: food, common objects and cute animals
  • No discussion is needed
  • Real-time effects are gathered

Eye tracking takes about three minutes, and involves sitting in front of a computer or laptop. Tracking the brain activity takes six minutes and requires participants to wear a soft hair net outfitted with sensors.

What We Want To Find Out

There are two main questions this research is trying to answer:

  • Do eye tracking and brain measures differ on increased food interest and hyperphagia?
  • Are these brain responses specific to PWS?

Researchers are trying to collect a mix of participants with PWS as well as controls who don’t have PWS to track their responses. Including kids without PWS means that siblings can also participate.

Current Study Requirements

The current study includes children with PWS and eligible siblings without PWS who are:

  • 3-12 years old
  • Able to sit and watch a computer screen for 5-10 minutes
  • Available for one visit of 30-60 minutes that’s to be scheduled within 90 minutes after a meal or snack

Participants will be asked to:

  • Look at pictures on a computer (5 mins)
  • Wear a soft hair net with sponges (10 mins)
  • Answer general knowledge questions (15 minutes)
  • Have their weight and height measured

Parents will need to complete a hyperphagia questionnaire and Nutritional Phase interview. The presentation includes information about how to get involved.

Online Questionnaire: New PWS Outcomes Measure

A new PWS outcomes measure is looking specifically at environmental controls: What do parents do to control food and food access in their homes?

The online questionnaire takes about 15 minutes and provides researchers with an idea of how people differ in controlling their food environment. One key question is how those controls and the need for them changes with drug treatment.






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Topics: Research

Susan Hedstrom


Susan Hedstrom is the Executive Director for the Foundation for Prader-Willi Research. Passionate about finding treatments for PWS, Susan joined FPWR in 2009 shortly after her son, Jayden, was diagnosed with Prader-Willi Syndrome. Rather than accepting PWS as it has been defined, Susan has chosen to work with a team of pro-active and tireless individuals to accelerate PWS research in order to change the future of PWS. Inspired by her first FPWR conference and the team of researchers that were working to find answers for the syndrome, she joined the FPWR team in 2010 and led the development of the One SMALL Step walk program. Under Susan’s leadership, over $15 million has been raised for PWS related research.