PWS Clinical Trials Alert: April 2017

pws-clinical-trials-alert-header-300x193.jpgFor more information on the opportunities below, as well as others, please visit our PWS Clinical Trials Opportunities page or (and search for "prader-willi"). We encourage members of the PWS community to seek out information that will help them decide whether participation is right for them. Please contact the study coordinators directly for important details about each study and to answer any questions you may have. Some trials may have funds available to support travel to study sites.

In addition to new studies, there may be changed criteria for older studies, so please read through carefully, check out the clinical trials webpage, and see how you might be able to contribute.

New and Currently Recruiting

Improving Social Skills in PWS with New Online Social Skills Group

Use your home computer/laptop with webcam to be a part of a group of PWS friends aged 16-26 years and learn new social skills. Skills group meets 3 times a week for 10 weeks. Study & group facilitators from Vanderbilt Kennedy Center in Nashville TN. For more information email Hailee Hunt-Hawkins or call 615-343-0915, or email Elizabeth Roof or call 615-343-3330. Groups are beginning in July so contact asap if you are interested.

Web-based Study on Cognition and Behavior in PWS

A study is being conducted by Researchers at the University of California, Los Angeles. The study will investigate cognition and behavior in individuals with PWS. You can participate if you yourself have PWS 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 Laura Pacheco at 310-825-3458, send an e-mail, or visit FPWR's web page on this PWS study. To participate, please complete this form.

Impact of Carbohydrate Restricted Diet upon Growth and Hyperphagia / Food Anxiety in Children with Prader-Willi Syndrome

Dr. Ann Scheimann and colleagues at the Johns Hopkins Children’s Center in Baltimore, MD, will be studying the effects of a carbohydrate restricted diet in school age children (ages 6-12 and obese) with PWS. Dr. Scheimann will examine the impact of a modified Atkins diet on growth, weight, anxiety and hyperphagia. For more information, please email Grace Felix, MD or call 410-955-8769, option 7, and speak to Dr. Felix or Dr. Scheimann. 

PRETEND (Parent‐focused Remote Education to Enhance Development) Research Study Information for Parents 

Dr. Anastasia Dimitropulos and her team at Case Western Reserve University have two ongoing, remote studies focused on optimizing development in children with PWS. The PRETEND study is recruiting parents of children ages 3-5 for a training program aimed at increasing learning and play, and decreasing problem behaviors. Families will continue to be enrolled throughout the spring and summer. See recruitment details here. For questions on either study, contact Anastasia Dimitropoulos and the Research Team via email or by phone at 216‐368‐3471.

Studies on Task Switching and Temper Outbursts in Prader-Willi Syndrome

Dr. Kate Woodcock is studying “task switching” difficulties in PWS, with the goal of developing tools and techniques to help those with PWS cope with unexpected change. Her group has created a video game to help individuals with PWS learn to switch tasks and is recruiting individuals ages 6 and up to participate in the study. Dr. Woodcock is located in Ireland, but the studies can be completed remotely anywhere in the world! 

For more information, please watch the video at If you are interested in taking part or would just like more information, please contact the research team on or contact Kate personally on or +44 (0) 28 9097 4886.

For more details, visit FPWR's web page on these PWS studies.

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. Find more details on this PWS study here.

Got cord blood? Consider sending a sample of cord blood from your child with PWS to Dr. Lalande. Find more details on this PWS study here.

On the Horizon

Cannabidiol Oral Solution for The Treatment of Subjects With Prader-Willi Syndrome

INSYS Therapeutics is planning a Phase 2 study of Cannabidiol (CBD) for individuals with PWS. The company will test the effects of their pharmaceutical CBD solution on hyperphagia-related behavior and weight. The study is not yet recruiting, but we'll let you know when it starts!

For more information on the opportunities above, as well as others, please visit our PWS Clinical Trials Opportunities page or (and search for "prader-willi"). 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.

For updated information on PWS clinical trial opportunities and to sign up for a monthly PWS Clinical Trial Alert, visit the PWS Clinical Trials page.PWS Clinical Trials

Topics: Research

Theresa Strong


Theresa V. Strong, Ph.D., received a B.S. from Rutgers University and a Ph.D. in Medical Genetics from the University of Alabama at Birmingham (UAB). After postdoctoral studies with Dr. Francis Collins at the University of Michigan, she joined the UAB faculty, leading a research lab focused on gene therapy for cancer and directing UAB’s Vector Production Facility. Theresa is one of the founding members of FPWR and has directed FPWR’s grant program since its inception. In 2016, she transitioned to a full-time position as Director of Research Programs at FPWR. She remains an Adjunct Professor in the Department of Genetics at UAB. She and her husband Jim have four children, including a son with PWS.