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Research (15)

Comparison - Angelman, Dupe15q, Prader-Willi syndromes

November 15th Is International 15q Day

October 22, 2020

Together, the Foundation for Prader-Willi Research, Angelman Syndrome Foundation and Dup15q Alliance are raising awareness of the similarities between Angelman, Dup15q, and Prader-Willi syndromes. Prader-Willi, Angelman, and Dup15q syndromes are all distinct neurodevelopmental disorders that are caused by changes within

Changes In Weight and BMI In Adolescents and Adults with PWS

September 22, 2020

In this 6-minute video, Drs. Theresa Strong and Caroline Vrana-Diaz review data and findings from the PWS Weight Study conducted by the Foundation for Prader-Willi Research. This study has been published in the Orphanet Journal of Rare Diseases. The full

Facial and Voice Processing Issues Affect Social Interactions in PWS

July 31, 2020

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. Social Interactions in PWS Impairments in social interactions can

Hip Dysplasia in Babies with PWS May Not Need Aggressive Treatment

July 22, 2020

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

Scoliosis Publication is Resource for Parents and Medical Professionals

July 10, 2020

Parents may want to download and keep a copy of this 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

Study Supports Eye Tracking to Measure Hyperphagia in PWS

July 2, 2020

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

Evidence For Accelerated Aging In Young Adults with PWS

June 23, 2020

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

Top-line Results Announced for Phase 3 Trial Evaluating DCCR for PWS

June 11, 2020

Soleno Therapeutics has announced top-line results from the company’s phase 3 trial, DESTINY PWS (C601), evaluating once-daily diazoxide choline controlled release (DCCR) tablets for patients with Prader-Willi syndrome (PWS). The results of the study are mixed, with some potential bright

PWS Registry Data: Vision [INFOGRAPHIC]

April 15, 2020

Although many symptoms of PWS are difficult to treat, impaired vision is a place where corrective lenses and/or surgery can make huge improvements. Data from the Global PWS Registry shows that the most common vision issues in PWS are nearsightedness,

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