We’re excited to share an important opportunity for families in the Prader-Willi syndrome (PWS) community to contribute to groundbreaking research that could help shape the future of treatments for hyperphagia.
The MY-HQ ("my hyperphagia questionnaire") project, led by Elizabeth Roof and her team at Vanderbilt University, is designed to better understand how people with PWS experience hunger—and how that hunger impacts daily life.
What Is MY-HQ?
The MY-HQ is a 15-minute, semi-structured interview designed for individuals with PWS. It includes 22 simple questions with pictures and words that help measure hyperphagia, one of the most challenging symptoms of PWS.
More than just a survey, MY-HQ provides a safe and validating space for people with PWS to share, in their own words, how hunger affects their independence and quality of life.
Why Is It Different?
Until now, most studies and clinical trials measuring hyperphagia in PWS have relied solely on parent or caregiver reports. The Vanderbilt team is developing MY-HQ as a structured tool that captures the individual’s own experience with hyperphagia—giving a vital new perspective.
Why It Matters
MY-HQ is a first-of-its-kind tool that allows individuals with PWS to directly confirm what caregivers report about hunger—something that has never been done before in this way.
Here’s why that matters:
- The FDA requires validated patient-reported outcomes like MY-HQ to approve new drugs for hyperphagia.
- Insurance companies seek evidence that these tools can predict who will benefit most from treatment.
- MY-HQ data could be critical to getting new PWS treatments approved and into the hands of families.
What to Expect
The MY-HQ interview takes place over Zoom with a trained and supportive interviewer. It’s casual, comfortable, and designed to be a positive experience for participants with PWS.
- Takes about 15 minutes to complete
- Interviewers use simple, concrete language and helpful pictures
- Results will be compared to parent/caregiver reports to improve overall accuracy
How You Can Help
The Vanderbilt team is seeking to interview a wide range of individuals with PWS, reflecting the full spectrum of the disorder—including those who are higher or lower functioning, and those who experience more or less severe hyperphagia.
Participation is possible even if your child is enrolled in a clinical trial (just let the team know).
By participating in MY-HQ, you’re helping the entire PWS community. Your voice can directly influence drug development, clinical trial success, and future access to treatments that target hyperphagia.
If your loved one has PWS (age 10 and up, English-speaking) and is able to communicate about their experiences, we encourage you to take part. Every conversation brings us one step closer to better therapies—and a better life.
Interested in participating?
Email Elizabeth Roof’s team to learn more or sign up for an interview.
Your story matters. Your voice matters. Let’s build a future where individuals with PWS can thrive—together.
