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NEW Tool to Help Measure Anxiety and Distress in PWS

A new tool, the PWS Anxiety and Distress Questionnaire, will measure anxiety in PWS. This anxiety questionnaire measures observable behaviors related to anxiety, and it reflects the collective experience of PWS parents and caregivers.

This guest blog was contributed by Sara Cotter, CEO, Levo Therapeutics.

IMG_37631-225x235When developing new medicines to treat PWS, companies need to demonstrate meaningful improvements in PWS symptoms. For growth hormone, this was relatively straightforward because changes in height are easily measured. For behavioral or psychiatric symptoms in PWS, this becomes a far more challenging task.

As a community, we are so fortunate to have the Hyperphagia Questionnaire for Clinical Trials, also known as the HQ-CT. This hyperphagia questionnaire was originally developed by Elisabeth Dykens and colleagues at Vanderbilt University, and further adapted for clinical trials by Zafgen and RTI Health Solutions. It measures observable behaviors related to hyperphagia, with questions like: “How upset did the person generally become when denied a desired food?” and “How often did the person try to sneak or steal food (that you are aware of)?”That said, the HQ-CT is only intended to measure a portion of PWS symptoms. For example, many of our children suffer from significant anxiety – both food- and non-food related – which is not measured by the HQ-CT. In fact, clinicians and researchers have struggled to find any questionnaire that adequately measures anxiety in PWS, given its unique features. Without this type of instrument, we can’t assess whether a new medicine helps treat anxiety in PWS.

Levo Therapeutics is working to change this by developing a new tool called the PWS Anxiety and Distress Questionnaire (PADQ). This anxiety questionnaire measures observable behaviors related to anxiety, and it reflects the collective experience of PWS parents and caregivers. The PADQ was created with support from FPWR and RTI Health Solutions.

Now we’re hoping you can help, too, by completing a 5–10 minute questionnaire on the PWS Global Registry.

If you're the primary caregiver for a person with PWS, age 5 or older, by completing this questionnaire you can help develop the PADQ and measure anxiety directly for the first time in our community.

You'll be asked to complete the questionnaire so twice; once to start and then a second time two weeks later.

Together we can shed light on this important aspect of PWS behavior!

Visit The Registry & Complete Your Survey

Learn more about PWS clinical trials by visiting our updated PWS Clinical Trials page.

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.