Contributed by Stacy Ward, MS Director of Family Support and Lynn Garrick, RN, BSN Medical/Research Coordinator Prader-Willi syndrome (PWS) is a rare neurodevelopmental genetic disorder that affects multiple systems in the body. There are many symptoms of PWS, including hyperphagia, behavioral challenges, hypotonia, incomplete sexual development, cognitive deficits, metabolic dysregulation, and several more. Hyperphagia is...
Category: Research
Clinical Trial Sites Announced for Radius Health’s RAD011 SCOUT-015 Study
Radius Health has announced the locations for its RAD011 SCOUT-015 Clinical Trials. Below, you will find a downloadable map with each participating hospital and medical center around the country. The RAD011 SCOUT-015 studies are in various stages, depending on the location, from initiated to activated and ready to enroll. You can also find a comprehensive...
Saniona Pausing All Clinical Trials for PWS Drug Tesomet Due to Funding Limitations
This morning, Saniona announced they will be voluntarily pausing all Phase 2b Clinical Trials for the drug Tesomet, which is being studied as a treatment for Prader-Willi syndrome (PWS). Saniona has explained that this pause is due to funding limitations and has nothing to do with the "safety or efficacy" of the drug itself. PWSA...
What Type of Research Matters to You?
For more than 40 years, PWSA | USA has played a critical role in sponsoring and advancing research for the benefit of our PWS community. We are excited to continue this important commitment to PWS research in ways you have always relied on (organizing scientific conferences, offering grants to clinicians, etc.). We are also eager...
Help PWS experts learn more about feeding tube use in PWS
The information below was provided by the Global PWS Registry --------------------------------------------------------------------------------------- We know feeding tubes are often used in infancy for our loved ones with PWS who have difficulty feeding in the early months after birth. If your child used a feeding tube, we are asking you to spend 10 minutes today completing the new...
Global PWS Registry Shares Latest Orthopedic Data for Individuals Living with PWS
The information below was provided by the Global PWS Registry and approved by the Institutional Review Board (IRB) -------------------------------------------------------------------------------------------- Physical activity and exercise are an important part of care for individuals with PWS. However, this can be difficult due to poor muscle tone and orthopedic issues. Many individuals require bracing, casting, and/or surgery for spinal issues....
Harmony Biosciences Now Enrolling Individuals with PWS for Upcoming Clinical Trial
Harmony Biosciences has released information about their PWS Phase 2 clinical trial where they will be studying "the safety and impact of an investigational medication on excessive daytime sleepiness, cognition, and behavioral function in people with PWS." Harmony Biosciences is currently looking for individuals with PWS between the ages of 6-65 to enroll in this...
Levo Therapeutics Receives Complete Response from FDA for its Decision on Carbetocin
January 18, 2022 08:00 ET | Source: Levo Therapeutics, Inc. CHICAGO, Jan. 18, 2022 (GLOBE NEWSWIRE) -- Levo Therapeutics, Inc., a biotechnology company dedicated to using genetic insights to advance treatments for Prader-Willi syndrome (PWS) and related disorders, announced today that it has received a Complete Response Letter (CRL) from the U.S. Food and Drug Administration (FDA)...
Saniona Launches TM006 Study Website to Advance Testing Efforts for Tesomet, a Drug to Help Individuals with PWS Feel Less Hungry
Following Saniona’s announcement that the company is initiating its Phase 2b clinical trial for Tesomet, which is being studied as a treatment for hyperphagia in Prader-Willi syndrome, the company has launched a website to help advance testing efforts for the drug. If you would like to participate in PWS research for Saniona’s TM006 study, this...
National Research Study Seeks Participation from Parents of Adults with Intellectual, Developmental Disabilities
TAKE SURVEY HERE INTERESTED IN BEING INTERVIEWED? CLICK HERE DOWNLOAD FLYER HERE
Saniona Initiates Phase 2b Clinical Trial of Tesomet for Prader-Willi Syndrome
Via Saniona: PRESS RELEASE December 28, 2021 Saniona (OMX: SANION), a clinical-stage biopharmaceutical company focused on rare diseases, today announced the initiation of a Phase 2b clinical trial of Tesomet in patients with Prader-Willi syndrome (PWS). Tesomet is an investigational fixed-dose combination therapy of tesofensine, a triple monoamine reuptake inhibitor, and metoprolol, a beta-1 selective blocker. Data from the...
The Chicago School of Professional Psychology is looking for Research Study Participants
YOU can help the Chicago School of Professional Psychology learn about the effects of a behavioral caregiver training program for caregivers of children with PWS. Participants will be compensated with a $500 Visa gift card following the completion of the study. Parents with children with multiple diagnoses can reach out to Dr. Bedard for clarification...