There is a reduction in the number of neurons that produce oxytocin in people with PWS. This, along with a range of other evidence supports the likelihood that abnormalities in the oxytocin system are key to the problems of PWS. However, studies examining the levels of oxytocin in PWS as well as clinical trials evaluating the efficacy of oxytocin on PWS symptoms has led to mixed results. We want to better understand these mixed findings. This will help to develop more effective interventions in the future.
Study Purpose The Mindfulness-Based Intervention for Temper Outbursts intends to evaluate the feasibility and acceptability of a mindfulness-based intervention for managing temper outbursts in PWS. The study will also evaluate the interventions impact on anxiety. This study will be conducted remotely via phone, email and video-conference and is, therefore, open to families both within and outside of Australia. Eligible participants with PWS, their primary caregiver (parent or resident carer) and a teacher or support worker will be invited to participate in an 18-week trial. Two weeks before the start of the trial primary caregivers will be trained to use and teach the mindfulness-based intervention. The 18-weeks will be divided into three six-week periods termed baseline, intervention and follow-up. Throughout the 18-weeks, primary caregivers and a teacher support worker will be asked to monitor the person’s behaviours. During the intervention period, primary caregivers will teach the mindfulness-based intervention to the person with PWS. A webinar sharing details on this study was recorded May, 2019. You can watch the webinar below or read a transcription of the webinar on our blog.
This 8-week telehealth (remote) intervention program focuses on building play skills, emotional understanding and regulation, and social skills in Prader-Willi syndrome.
Study Purpose GLWL is conducting a Phase 2 clinical trial to to evaluate the efficacy, safety, and pharmacokinetics of GLWL-01 in treating hyperphagia in patients with PWS. Participants will be assigned to one of two treatment sequences (GLWL-01/Placebo or Placebo/GLWL-01), with each sequence consisting of two treatment periods separated by a washout period.
Researchers at Vrije University in Amsterdam are conducting a study to better understand how individuals with PWS perceive and feel pain. For more information, please see the recruitment flyer for the Pain Questionnaire study and contact postdocteam.fgb@vu.nl.
In this study, adults will be interviewed 3 times over a 6 month period will be asked questions about personal and family health, family history and routines and what everyday living is like caring for a child with PWS.
CSU Fullerton is excited to invite families to participate in a study investigating a parent-led physical activity program for children ages 4 to 7 years old with and without PWS. A child ages 4-7 years with or without PWS and one parent per family are invited to participate.
A New Web-Based Research Study on Cognition and Behavior in PWS is Recruiting Participants A study is being conducted by Researchers at the University of California, Los Angeles. The study will investigate cognition and behavior in a population of individuals between the ages of 10 and 50 with a diagnosis of Prader-Willi Syndrome (PWS). You can participate if you yourself have Prader-Willi Syndrome, or if you are the parent of a child between the ages of 10-50 with PWS. Participation may take up to an hour and a half. There is no travel required as the study is web-based which means that you will be asked to complete online clinical and neurocognitive forms. If you have any questions about this research study, please call Ariana Vajdi at 310-825-3458 or e-mail beardenlab.ucla@gmail.com
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.
