News

A new study is looking for participants to assess the impact of a behavioral training program for caregivers of children with Prader-Willi syndrome (PWS). The training program, led by Kasey Bedard, PhD, at the Chicago School of Professional Psychology, will be conducted virtually by Zoom and Qualtrics, according to…

Excessive eating in Prader-Willi syndrome (PWS) increases the risk of mortality not only by making patients prone to obesity and its associated health problems, but also by raising the risk of accidents like choking, a new study indicates. “There are the longer-term problems that arise through obesity and the…

Subtle heart changes in people with Prader–Willi syndrome (PWS) may begin relatively early in adulthood, and being overweight may be related to these cardiovascular abnormalities, a small study reported. “We need to manage obesity and obesity-related disorders in order to prevent heart failure and ischemic heart disease [reduced blood…

Infants and toddlers with Prader-Willi syndrome (PWS) have significantly lower blood levels of insulin-like growth factor 1 or IGF-1 — indicative of growth hormone (GH) deficiency — than their healthy peers, a small study in Japan shows. This is the first study to conduct this type of comparative analysis…

A multidisciplinary approach that included weight reduction through calorie restriction and diuretics, ventilation support, skin care, and rehabilitation successfully managed life-threatening right heart failure due to severe obesity in a young man with Prader-Willi syndrome (PWS). These findings from a case study highlight not only the effectiveness of such a…

During pregnancy, Prader-Willi syndrome (PWS) may manifest as an excess of fluid around the developing fetus coupled with restricted fetal growth and decreased fetal movement, a new report indicates. These signs should alert clinicians to consider testing for the possibility of a PWS diagnosis, the researchers wrote. The…

Suicidal thoughts are more frequent in adults with Prader-Willi syndrome (PWS) than in the general population and typically begin in mid-teenage years, according to a study using the Global PWS Registry. In contrast, youths with PWS appear to have fewer suicidal thoughts than the general population of children and…

There is no substantial evidence supporting the efficacy of LV-101 (intranasal carbetocin), a nasal spray designed to reduce the insatiable hunger, called hyperphagia, that’s a hallmark of Prader-Willi syndrome (PWS), according to a 12-1 vote by a U.S. Food and Drug Administration (FDA) advisory committee. The overwhelmingly negative vote followed…

Four organizations have joined efforts to fund the addition of Prader-Willi syndrome, Angelman syndrome, and Dup15q syndrome to the Early Check newborn screening panel in North Carolina. The initiative is led by the Foundation for Prader-Willi Research (FPWR), Angelman Syndrome Foundation, Foundation for Angelman Syndrome Therapeutics (FAST), and…

In return for a reduction in the abnormal hunger and excessive eating, called hyperphagia, that characterizes Prader-Willi syndrome (PWS), caregivers of patients with the rare genetic disease — even many who did not identify as risk-takers — are willing to accept medications with a potential for side effects,…