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Foundation for Prader-Willi Blog | Research (5)

Demographics and Comorbidities Among Hospitalized Patients With PWS

Dr. James Luccarelli, a researcher at Massachusetts General Hospital, recently published a study summarizing the demographic characteristics and medical complications of individuals with PWS who were treated at acute care hospitals in the United Stat...

Topics: Research

What's Happening in PWS Research [2022 Conference Video]

In this one hour and 17-minutevideo, Dr. Theresa Strong and the FPWR research team explore recent research breakthroughs and emerging standards of care for PWS.

Topics: Research

Watching for Mental Health Issues

Lauren Schwartz-Roth, clinical psychologist and mom to a young adult with PWS, shares how to identify and treat serious mental health issues in our loved ones with PWS.

Topics: Research

Advancing Hope: New Therapies for PWS [2022 Conference Video]

In this 50‑minute video, Dr. Tony Holland, Dr. Lauren Schwartz, and Dr. Deepan Singh discuss two promising studies of therapies for Prader-Willi syndrome: Vagus Nerve Stimulation (VNS) and bright light therapy. The session includes Q&A from parti...

Topics: Research

PWS Early Interventions: 5 Therapies for Prader-Willi Syndrome

The time immediately following a diagnosis of PWS can be very difficult, and parents typically are dealing with an overwhelming amount of new information. It's important to take the time you need to process what is happening and connect with others f...

Topics: Research

Harmony Biosciences Announces Topline Results From Phase 2 Pitolisant Study

Today, Harmony Biosciences announced topline data on the primary outcome, excessive daytime sleepiness, from their Phase 2 proof-of-concept trial in patients with Prader-Willi syndrome, or PWS. The study included 65 volunteers, ages 6 to 65, who were...

Topics: Research

FPWR Announces Funding of $1.8M for Research Grants

The Foundation for Prader-Willi Research announces our second round of Research Awards in 2022, exceeding $1,800,000. Representing the largest single round of funding in FPWR history, we are excited to fund a robust group of 14 grants that encompass ...

Topics: Research

Introducing PADQ: a New PWS-Specific Measure for Anxiousness & Distress

Thanks to almost 900 PWS families who completed multiple surveys in the Global PWS Registry, a new study examining sleep disorders, seizures, and psychiatric behaviors provides a great deal of valuable data and new insights into the relationship betw...

Topics: Research

Sleep Apnea in People with PWS

Is your loved one getting a good night’s sleep? Sleep apnea is a major concern for people with Prader-Willi syndrome, affecting as many as 70% of all participants in the Global PWS Registry.

Topics: Research, Sleep