Caregivers of young children with Prader-Willi syndrome (PWS) report low quality of life, highlighting the need for additional support systems for these families, a new Chinese study has found. The findings also indicate that caregivers of PWS children with poor social skills or other symptoms such as obesity or…
News
Recombinant growth hormones Eutropin and Genotropin were found to produce similar improvements in growth, body fat composition, and motor and cognitive development in infants with Prader-Willi syndrome (PWS), a study has found. The results also suggest that Eutropin is a safe growth hormone to treat infants with PWS.
The birth of children in the U.S. with Prader-Willi syndrome (PWS) — a rare disease caused by deletions in the chromosome 15q11-q13 region of the father — does not follow a seasonal pattern, a study found. The results suggest that seasonal exposure to chromosome-damaging agents…
Research Supported by PWS Foundation to Examine Cause of Behavioral Problems, Possible Treatment
A grant winner’s research may help to advance a possible treatment of behavioral problems like temper outbursts in Prader-Willi syndrome patients. The treatment, an approved medication but not for PWS, works by modulating the levels of a neurotransmitter that might restore a balance in brain signals. …
The Data Safety Monitoring Board (DSMB) has recommended, for the second time, the continuation of Soleno Therapeutics’ Phase 3 DESTINY PWS clinical trial evaluating the effects of diazoxide choline controlled release (DCCR) for treating children and adults with Prader-Willi syndrome (PWS). DCCR is…
Prader-Willi syndrome (PWS) has been given its own unique code by the National Center for Health Statistics (NCHS), which will make it easier to track accurate data on medical care and clinical outcomes of people with the disease. The NCHS is responsible for assigning different diseases with ICD-10…
Results of a Phase 2 clinical trial testing diazoxide chloride controlled release (DCCR) in people with Prader-Willi syndrome (PWS) showed the investigational therapy can address some unmet needs in this patient population — namely hyperphagia, or excessive appetite, and aggressive behavior. The data were published in the journal …
Next month’s annual conference of the National Organization for Rare Disorders (NORD) in Washington, D.C., couldn’t come at a better time, says Marshall Summar, MD, chairman of NORD’s board of directors. “The pace of discovery in rare diseases has gone from brisk to hypersonic,” Summar told Bionews Services, publisher…
More than 800 people are expected to converge on Orlando, Florida, in late October for the 35th National Convention of the Prader-Willi Syndrome Association (PWSA). The event, to take place over a four-day period at the Caribe Royale Hotel, is divided into three segments: a two-day medical and scientific…
Saniona announced that adolescents with Prader-Willi syndrome (PWS) showed improvements in weight, body mass index (BMI), and hyperphagia score — measuring appetite reduction — when treated with the investigational therapy…
Recent Posts
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- Study uses mobile app to collect data on PWS caregiver burden
- Study shines light on how Prader-Willi kids experience puberty
- The quiet and noble work of caregiving in Prader-Willi syndrome
- PWS can affect siblings’ emotional well-being, new review finds
- Heart activity changes prompted pause in trial of ARD-101 in PWS
- ‘Telemental health’ may help ease stress for caregivers of PWS children
- Severe sleep apnea in PWS children strongly linked to extra weight: Study