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Foundation for Prader-Willi Blog | Research (5)

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PWS Registry Data: Skin Picking in PWS [INFOGRAPHIC]

Individuals with PWS often exhibit a variety of self-injurious behaviors, and one of the most common of these is skin picking. Individuals typically start with a fixation on some imperfection in the skin. This can be a rough or dry patch of skin, an ...
April 9, 2024 Read More

Topics: Research

Sleep and Schaaf-Yang Syndrome [2023 CONFERENCE VIDEO]

In this 74‑minute video, Dr. Joanna Wrede, a pediatric sleep neurologist at Seattle Children’s Hospital, explains how sleep disorders are identified and treated in children with Schaaf-Yang syndrome.
April 4, 2024 Read More

Topics: Research

Behavior and Mental Health - Age 5 and Up [2023 CONFERENCE VIDEO]

In this 30‑minute video, Patrice Carroll, Elizabeth Roof, and Dr. Deepan Singh discuss strategies for addressing behavioral and mental health challenges in children aged 5 and up with Prader-Willi syndrome.
March 14, 2024 Read More

Topics: Research

Learning from Every Patient: The PWS-CLIC Starts a Shared Database

The PWS-Clinical Investigation Collaborative (PWS-CLIC) is a network of PWS clinical experts, formally established in 2021. The work of the PWS-CLIC is supported by FPWR. This network has expanded over the past two years and now includes 25 clinical ...
March 5, 2024 Read More

Topics: Research, PWS People

What Is the PWS CLIC [2023 Conference Video]

In this 10‑minute video, Caroline Vrana-Diaz, FPWR Research Project Coordinator, explains how the PWS CLIC is helping to improve standards of care for people with Prader-Willi syndrome.
March 1, 2024 Read More

Topics: Clinical Issues, Research

Understanding the Impact of Schaaf-Yang Syndrome from Caregiver Insights

Schaaf-Yang syndrome (SYS) is an ultra-rare disorder that was first identified in 2013. It is caused by mutations in the MAGEL2 gene, a gene that is also deleted or inactivated in Prader-Willi syndrome (PWS). Because SYS is a relatively newly describ...
February 21, 2024 Read More

Topics: Research, Parents, Schaaf-Yang Syndrome

Feeding Tube Use and Complications in Babies With PWS

Insights into how feeding tubes are used in infants with PWS—and the complications families may encounter—have emerged from the “Feeding Tube Survey” completed by nearly 350 families in the Global PWS Registry. By analyzing these responses, Drs. Sani...
February 13, 2024 Read More

Topics: Research

New Research into the Sense of Smell in PWS

It is well established in science as well as culture that the smell of food is linked to appetite, but despite the extensive research being conducted to understand the biology underlying the most notable symptom of Prader-Willi Syndrome, hyperphagia,...
January 31, 2024 Read More

Topics: Research

Analysis of Hyperphagia Questionnaire for Clinical Trials (HQ-CT) Scores

The Hyperphagia Questionnaire for Clinical Trials (HQ-CT) is typically completed by caregivers for individuals with PWS who are enrolled in clinical trials. The questionnaire is designed to evaluate changes inhyperphagia during the course of the tria...
January 10, 2024 Read More

Topics: News, Research, Parents

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The Foundation for Prader-Willi Research (federal tax id 31-1763110) is a nonprofit corporation with federal tax exempt status as a public charity under section 501(c)(3).

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The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research and therapeutic development.

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