Research Blog

FPWR and PWSA-USA Partner for Telehealth Needs Assessment

FPWR and the Prader-Willi Syndrome Association | USA (PWSA | USA) have partnered to conduct a study to measure interest in telehealth as a way of increasing access to care from Prader-Willi syndrome specialists. In addition, the project aims to better understand the demographic makeup of the PWS parent and caregiver population, to measure stress associated with traveling for healthcare, and to measure the wellbeing of children with PWS.

We Celebrate Our Life with PWS

A special contribution by guest blogger Jennifer Lee

Three little words changed our lives forever: Prader-Willi syndrome.

Jhett was 23 days old. He had spent his life to this point in the NICU. We knew we were testing for PWS, and due to my research via Google, I knew how my family’s life was going to change with a positive diagnosis. And so the time came. I, alone by Jhett’s bedside, was told of the confirmation of PWS.

Carbetocin for PWS: Phase 3 Clinical Trial Results Announced

Today, Levo Therapeutics announced the promising results of their Phase 3 Clinical Trial of carbetocin for treating symptoms of PWS.

 

Facial and Voice Processing Issues Affect Social Interactions in PWS

Children and adults with PWS frequently show impairments in their social interactions. New research on how people with PWS process visual and auditory cues could lead to social interventions that help.

Hip Dysplasia in Babies with PWS May Not Need Aggressive Treatment

A new study looking at the long-term consequences of early hip dysplasia does not support an aggressive approach to treating hip dysplasia in babies with PWS. The paper provides useful guidance and suggestions for physicians who are evaluating babies with PWS.

Car-aoke, Other Creative Fundraisers Fueled By Social Distance

During a time when much feels uncertain, one constant that we can count on is the never ending drive and tenacity of our PWS families and their desire to improve the future of Prader-Willi syndrome through supporting research.  

Scoliosis In PWS Covered In New Publication

Parents may want to download and keep a copy of a newly available review on scoliosis in PWS. The paper comes from Dr. Harold van Bosse, an orthopedic surgeon at Shriner’s Hospital with extensive experience in caring for kids with PWS and scoliosis, and Dr...

Study Supports Eye Tracking to Measure Hyperphagia in PWS

Results have now been published on a study looking at eye tracking and hyperphagia in younger children with PWS (ages 3-11 years old). The study found that children with PWS who had higher hyperphagia questionnaire scores and more advanced nutritional phases also showed greater attention to food as measured by eye tracking...

Evidence For Accelerating Aging In Young Adults with PWS

Two recent papers address an area that has received very limited attention to date, aging in PWS. Both papers point to differences in aging in young adults with PWS compared to typical individuals and suggest that this is an area that is in need of further investigation.

PWS Registry Data: Dermatology [INFOGRAPHIC]

When it comes to dermatological or skin issues in PWS, the first things that may come to mind are sensitivity to the sun due to fair skin, and skin picking. However, there are a variety of additional skin-related concerns for individuals with PWS. Data from the Dermatology Survey in the Global PWS Registry shows that individuals with PWS are more likely to have seen a dermatologist as they get older. By 15 years of age, 28% of registry participants have seen a dermatologist, and that number rises to 45% by age 21.