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Changes In Weight and BMI In Adolescents and Adults with PWS

Findings from the PWS Weight Study include: individuals' weight and BMI improved based on how much of their lives they had received growth hormone therapy.

In this 6-minute video, Drs. Theresa Strong and Caroline Vrana-Diaz review data and findings from the PWS Weight Study conducted by the Foundation for Prader-Willi Research. This study has been published in the Orphanet Journal of Rare Diseases.



The full publication is available here

Understanding how weight changes over time in Prader-Willi syndrome is important for capturing the contemporary natural history of PWS as well as assessing the impact of new treatments for hyperphagia. The PWS Weight Study was a text message-based study that included 165 adolescents and adults with PWS to assess changes in weight and body mass index (BMI) over a six-month period.

There was considerable variability in weight across participants with 33% percent of the participants at a normal weight,  15% overweight and 52% obese. Weight was collected weekly, while changes in height, living situation, access to food, activity level, and medication were collected at three-month intervals.

Over the course of the 6-months of the study, small increases in weight and BMI were observed. Overall, participant weight increased over the study period by + 2.35%, while BMI was relatively stable, albeit high. Changes in living situation, activity, food access, and medication had limited impact on weight and BMI changes however, the percentage of life on growth hormone (GH) therapy statistically improved weight and BMI in an individual. 

We anticipate that the results of this PWS research study will inform clinical trials for hyperphagia/obesity related therapies in PWS and provide a basis for understanding the efficacy of new therapies for hyperphagia in the real-world setting.

PWS Clinical Trials

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.