PWS Clinical Trials Alert | April 2018

The days we have been waiting for are now upon us! PWS clinical trials are coming quicker than you can imagine and we want to keep you up to date on these opportunities!  Sign up for our monthly Clinical Trials Alert to stay abreast of the latest trial opportunities and please share these opportunities with others that you think may be interested.

New PWS Clinical Trials This Month

The Research Team at Case Western are recruiting patients for 2 studies.  The team will be traveling to Atlanta in mid-May for families who would like to participate in either of these studies.

Intervention Study for Children with PWS Ages 3-9

This 8-week telehealth (remote) intervention program focuses on building play skills, emotional understanding and regulation, and social skills. The study involves two in-person visits, one at the beginning and one at the end, that would be conducted in the family's local area and then the 8-week intervention, which is all done via remote videoconferencing. Learn more >>

Eye Tracking Study Recruiting Children Ages 3-12

This study titled "Developing Objective Biomarkers of Hyperphagia in Children with Prader-Willi Syndrome" requires a single in-person visit. Eye tracking technology will be used to measure how children process images of food vs. objects. The aim of this study to to determine if eye tracking can help us better understand and measure hyperphagia objectively.  For this study, both children with PWS and neurotypically developing peers are needed, ages 3-12. This study is being done in collaboration with the team at Vanderbilt University. Learn more >>

Mindfulness-Based Intervention for Temper Outbursts

The study is looking for individuals with and without PWS ages 13 to 30 years who have either a mild intellectual disability or typical IQ. This study will be conducted remotely via phone, email and video-conference and is, therefore, open to families both within and outside of Australia. Learn more >>

Oxytocin and the Autonomic Nervous System in PWS

Patients ages 13-30 are needed to participate in a study aiming to understand the nature of the oxytocin abnormality in PWS. The study will be conducted over a 2 hour visit at either the University of Sydney in Camperdown, NSW or the Royal Children’s Hospital in Parkville, Victoria. Learn more >>

GLWL Recruiting Patients Ages 16-65 for Phase 2 Study Aiming to Address Hyperphagia

Site locations are now open in San Diego, Gainesville, Nashville, Cleveland, Edmonton and Montreal. Eligible patients need a BMI between 27 and 60. Study is 18 weeks in length. Learn more >>

PWS Clinical Trials Overview

A multitude of factors come in to play when determining whether to participate in a clinical trial. To help make it easier for you to see which trials you may be right for you, we've created an easy to read matrix which compares common variables such as age and BMI requirements, study sites and estimated start dates (screen shot below). We're updating this matrix all the time. See the full PWS clinical trials matrix here.

PWS-clinicl-trials-alert-april-2018 

FPWR is pleased to share with you these opportunities for participating in PWS clinical trials. Please contact the study coordinators directly for important details about each study and to answer any questions you may have; links are included in the PWS clinical trials matrix page. Some trials may have funds available to support travel to study sites.

Donation of Tissues Needed

Scientists need samples to study PWS – without your contributions, these studies can’t make progress!

Got baby teeth? Share them with Dr. Reiter. Fresh baby teeth are needed, particularly from those with PWS by UPD. You must have a kit ahead of time. Learn how to participate in baby teeth donation for PWS research here

Post-Mortem Brain Donation. Organ donation is a highly personal decision that has the power to accelerate research and transform the lives of countless families affected by PWS. You can make a tremendous difference in research into Prader-Willi syndrome by participating in this program. In the event of a death, contact the 24-hour hotline number: 1-877-333-0999 for immediate assistance. Learn more about post-mortem brain donation for PWS research here.

 

We encourage members of the PWS community to seek out information that will help them decide whether participation is right for them. Anyone considering participating in a clinical trial should discuss the matter with his or her physician. FPWR does not endorse or recommend any particular studies.

PWS Clinical Trials

Topics: Research

Susan Hedstrom

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Susan Hedstrom is the Executive Director for the Foundation for Prader-Willi Research. Passionate about finding treatments for PWS, Susan joined FPWR in 2009 shortly after her son, Jayden, was diagnosed with Prader-Willi Syndrome. Rather than accepting PWS as it has been defined, Susan has chosen to work with a team of pro-active and tireless individuals to accelerate PWS research in order to change the natural history of PWS. Inspired by her first FPWR conference and the team of researchers that were working to find answers for the syndrome, she hosted her first One SMALL Step walk in 2010 and began the development of the One SMALL Step walk program which now raises over $1.5 million a year for PWS research.

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