Measuring hyperphagia is essential to developing and evaluating treatments for Prader-Willi syndrome (PWS). But because hyperphagia involves complex food-related thoughts and behaviors, researchers need tools specifically designed to capture these experiences.
In 2016, Zafgen, Inc. donated its Hyperphagia Questionnaire for Clinical Trials (HQ-CT) to FPWR, making the tool available to researchers studying potential PWS therapies. The HQ-CT was originally developed by Dr. Elisabeth Dykens and colleagues at Vanderbilt University and was adapted for use in PWS clinical trials to assess food-seeking behaviors common among individuals with PWS,
A tool for measuring hyperphagia
The HQ-CT is a caregiver-reported questionnaire designed to measure observable behaviors associated with hyperphagia. The tool has been used in more than a dozen PWS clinical trials, helping researchers evaluate whether potential treatments are affecting hyperphagic behaviors.
Having a consistent way to measure hyperphagia across studies has been important for advancing PWS clinical research. The HQ-CT has helped researchers quantify changes in hyperphagia and compare findings across different studies and potential treatments.
Expanding our understanding of hyperphagia
FPWR has continued to advance research using the HQ-CT beyond individual clinical trials. In 2024, FPWR researchers analyzed HQ-CT data from more than 1,000 individuals—including more than 400 people with PWS and more than 600 typically developing individuals—to better understand the range of hyperphagia scores across ages and populations. The study provided normative data that can be used as a comparison in future research.
This research also explored an important question about what hyperphagia scores actually tell us about daily life for people with PWS. In interviews with caregivers of adults with PWS who had relatively low HQ-CT scores, researchers found that strict routines and extensive food-security measures often played an important role in managing food-related behaviors. These findings highlight the complexity of hyperphagia and the importance of considering the broader context in which symptoms are managed.
More Tools for PWS Research
The HQ-CT remains an important tool for measuring hyperphagia, but it is only one part of understanding PWS. Researchers also need ways to measure other behavioral and emotional symptoms that can affect quality of life.
That work is continuing. FPWR has supported the development of additional PWS-specific research tools, including the PWS Profile, which measures a broader range of behavioral and emotional symptoms such as rigidity, compulsive behaviors, anxiety, depression, and repetitive behaviors.
Together, these tools help researchers more fully understand PWS and determine whether new treatments are making a meaningful difference.
How to Access the Questionnaire
Researchers interested in gaining access to the HQ-CT can contact FPWR.