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.
Vanderbilt and Case Western Universities are collaborating in a new study to better understand how eye tracking technology can be used to measure how children process images of food vs. objects.
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 Carbetocin (ACP-101) is an investigational drug that binds with oxytocin receptors with greater sensitivity than oxytocin, a naturally occurring hormone. Carbetocin is not approved in the United States but is approved in some other countries for the treatment of women with excessive bleeding after giving birth via cesarean section.
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.
Researchers at Vanderbilt Kennedy Center in Nashville, Tennessee are conducting a study to improve and learn new social skills in PWS with an online social skills group. The project uses your home computer/laptop with webcam to participate in a group of PWS friends aged 16-26 years. The group will meet 3X/week for 10 weeks. For more information, please contact: Hailee Hunt-Hawkins hailee.m.hunt@vanderbilt.edu at 615-343-0915 Elizabeth Roof elizabeth.roof@vanderbilt.edu at 615-343-3330
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.
