The U.S. Food and Drug Administration (FDA) has lifted the hold on late-stage clinical testing of ARD-101, an investigational oral therapy for people with Prader-Willi syndrome (PWS) and hyperphagia, an insatiable feeling of hunger. “We are pleased that the FDA has lifted the clinical hold on ARD-101, allowing…
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An international survey found that clinicians with the most experience caring for infants with Prader-Willi syndrome (PWS) are more likely to forgo a sleep study before starting growth hormone therapy — contrary to current guidelines. For U.S. doctors, the most commonly cited reason was avoiding a delay in treatment…
Testosterone replacement therapy (TRT) may help preserve bone health and improve body composition in boys and young men with Prader-Willi syndrome (PWS), without worsening challenging behaviors in most cases, according to a study in the Netherlands. Although TRT has raised concerns about worsening behavioral problems in males with PWS, more…
A structured interdisciplinary inpatient program for adolescents and young adults with Prader-Willi syndrome (PWS) and severe behavioral problems was associated with behavioral, functional, and metabolic improvements, a small study found. The study included nine participants who underwent an inpatient program combining behavioral therapy, supervised nutrition, rehabilitation, and psychiatric care.
Palatin Technologies expects to begin early-stage clinical trials next year for two experimental treatments designed to curb extreme hunger in people with Prader-Willi syndrome (PWS) and other rare obesity conditions. While Palatin previously anticipated launching these Phase 1 trials this year, the company has pushed the start…
The duration of low blood oxygen levels during sleep may vary among people with Prader-Willi syndrome (PWS) depending on their genetic subtype, a small study in Brazil suggests. Researchers found that children and young adults with PWS caused by a genetic deletion — the most common PWS cause —…
Nearly 400 civic, business, and philanthropic leaders in South Florida gathered this week for a second annual event aimed at raising funds to support people with Prader-Willi syndrome (PWS) and other developmental disorders, particularly as they “transition into adulthood.” The fundraising gala was hosted by the Supreme Twins…
Five years of growth hormone (GH) treatment allows children with Prader-Willi syndrome (PWS) who are experiencing failure to thrive at the start of treatment to develop similar height-adjusted lean body mass, or non-fat tissue, to those without failure to thrive at GH initiation. That’s according to a study in…
Starting growth hormone therapy as early as possible may help children with Prader-Willi syndrome (PWS) develop stronger thinking and language skills, according to a study from Taiwan. “In addition to improved motor development, on the basis of previous studies, our study demonstrated that [growth hormone therapy] initiation at 3…
Children with Prader-Willi syndrome (PWS) who experience abnormally slow or shallow breathing during sleep may face an increased risk of developing pulmonary hypertension, according to a U.S. study. The findings suggest that sleep-related hypoventilation — a condition in which breathing is inadequate to remove carbon dioxide — is…
Recent Posts
- Setting boundaries at home and work helps me as a PWS caregiver
- FDA lifts hold on clinical testing of experimental PWS treatment
- Redefining the menu to keep the magic of Halloween alive with PWS
- PWS doctors skip sleep studies for early growth hormone therapy
- We all ‘come out’ in our own ways, including PWS families
- Testosterone therapy aids bone health in PWS, with low behavior impact
- Why common illnesses can look different with Prader-Willi syndrome
- Getting away is hard for couples raising a medically complex child
- Interdisciplinary inpatient care may boost outcomes in PWS patients
- Staying present is a challenge when you know what PWS might bring next