Dr. Kate Woodcock is studying "task switching" difficulties in PWS. People with PWS have deficits in their ability to task switch, and this may contribute to repetitive behaviors and temper outbursts (see a recent blog here, and information about Dr. Woodcock's FPWR supported study, here). Dr. Woodcock's group is recruiting for three studies related to this issue.
Dr. Lawrence T. Reiter at the University of Tennessee Health Science Center in Memphis, TN is conducting a research study to determine if neurons can be grown from the dental pulp of individuals with various neurogenetic syndromes including chromosomal duplications and deletions of human chromosome 15q, including PWS. These neurons will be valuable tool in understanding the differences between PWS and non-PWS, as well as for testing potential therapeutics.
UPDATE: This study was terminated. Zafgen has decided to cease development of Beloranib due to high risk of thrombotic events. See the letter from Zafgen to the PWS community.
Dr. Merlin Butler and colleagues at Kansas University Medical Center will be working with Dr. Fregni (Harvard University) and Dr. Weisensel (Prader-Willi Homes of Oconomowoc) to evaluate the effects of a weak, noninvasive form of brain stimulation on food cravings and overeating in adults with Prader-Willi syndrome. More background information about the study is available here, and more details about the clinical trial, including contact information, is available here. Find more information about hyperphagia here.
The purpose of this study is to determine the presence of central adrenal insufficiency in children with Prader Willi Syndrome using low dose (1 mcg) ACTH stimulation test compared to results of overnight metyrapone test. The study is being conducted at Nationwide Children's Hospital in Columbus, Ohio. For more information, visit clinicaltrials.gov here or contact the study coordinator.
NO LONGER RECRUITING
Update: This Phase I study has been completed - we look forward to publication of the results, and the next steps of oxytocin development.
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.
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.
