PRETEND (Parent‐focused Remote Education to Enhance Development) Research Study Information for Parents What is the goal of this research? This research study has two main goals.
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.
