There is limited research that has interviewed siblings to get an in-depth perspective of what it is/was like for them to live with a brother or sister with Prader-Willi Syndrome. Further research will allow for siblings to be better-understood and provided with adequate resources and support that they may not be currently receiving.
jessicab
Recent Posts
The overall objective of this FPWR funded study is to explore the mechanisms by which macronutrients regulate hyperphagia, satiety, food intake and weight gain in Prader Willi Syndrome (PWS). Using a cutting edge metabolomics approach, researchers will measure a broad array of hormones, cytokines, amino acids and fatty acid metabolites prior to and 48 hours after either a low carbohydrate or low fat diet. The study will also ask whether a low carbohydrate diet suppresses levels of the hunger hormone ghrelin and increases appetite-suppressing hormones to a greater degree and for longer duration than a low fat diet. Information obtained from this study will be used to design evidence-based diet plans for children with PWS.
Family-based Intervention for Youth With Prader-Willi Syndrome: The Active Play at Home Study (APAH)
It is important for those with PWS to incorporate physical activity into their daily lives and increasing physical activity in this population is an area of high interest. This study involves a 24-week home-based physical activity suitable for children and adolescents ages 8-15 with PWS as well as obese children without PWS ages 8-11 years. Researcher will study whether this home based program improves physical activity, motor proficiency, central sensory reception and integration, body composition, and quality of life.
