Category: Research

September Is Newborn Screening Awareness Month

What is newborn screening? Newborn screening is one of the most successful public health programs ever enacted, saving thousands of lives over the past 50 years. Newborn screening allows physicians to catch rare genetic conditions at birth and start treatment almost immediately following birth; it enables efficient diagnosis and access to treatments that can...

Prader-Willi Syndrome Association | USA and the Foundation for Prader-Willi Research Partner for Telehealth Needs Assessment

Prader-Willi Syndrome Association | USA (PWSA | USA) and the Foundation for Prader-Willi Research (FPWR) 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 Prader-Willi syndrome (PWS)...

Prader-Willi Syndrome and Gastroparesis

There is little evidence in the literature regarding the incidence of gastroparesis in PWS and how it affects families in the PWS community. Within the Global PWS Registry, 13% of participants have been diagnosed with gastroparesis (N=739). Of those with gastroparesis, more than half were diagnosed under age 10. The severity of gastroparesis reported...

Levo Therapeutics Announces Top-line Results from Phase 3 CARE-PWS Study of LV-101 (Intranasal Carbetocin) for the Treatment of Prader-Willi Syndrome

CHICAGO–(BUSINESS WIRE)–Levo Therapeutics, Inc., a biotechnology company dedicated to using genetic insights to advance treatments for Prader-Willi syndrome (PWS) and related disorders, announced today top-line results from the Phase 3 CARE-PWS clinical study evaluating LV-101 (intranasal carbetocin) for the treatment of PWS. This syndrome is a complex, neurodevelopmental disorder that occurs in approximately 1...

Surviving Quarantine as a Sibling

Siblings of individuals with Prader-Willi syndrome (PWS) are at an increased risk of developing emotional and mental health problems. According to the 2019 study on PWS sibling well-being, participants showed incredibly high rates of distress and lower than average resilience (Murphy, Thornton & Thornton, 2019.) The outbreak of COVID-19 and subsequent quarantine may make...

Visceral Adipose Tissue Resides Within the Reference Range in Children with Prader-Willi syndrome Receiving Nutritional Intervention on a Regular Basis

In a recently published study from Japan, 20 children with Prader-Willi syndrome (PWS) were retrospectively evaluated for the effect of nutritional intervention (caloric restriction) and growth hormone (GH) treatment on visceral adipose tissue (VAT). VAT has been shown to be a marker for risk of metabolic complications and is believed to be a better...

Update: Oxytocin Phase 2 Trial

It has been nearly one year since we learned of the initial potential of oxytocin and PWSA (USA) began raising funds for the phase 2 clinical trial. This trial will provide us a greater understanding of the potential benefits, appropriate dosage needed, and additional vital information. The phase 1 study results were very positive...

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