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Foundation for Prader-Willi Blog | Research

How to Identify Mental Health Challenges in Your Loved One with PWS

October is Mental Health Screening Month, and we're encouraging our PWS community to learn more about how to identify mental health challenges early.

Topics: Research

Carbetocin Approval: Your Comment Could Make the Difference

Would you like to be part of our community-wide effort to advocate for new treatments for PWS? The FDA is now accepting comments from the public regarding a new drug application currently under review for LV-101 (intranasal carbetocin), a potential t...

Topics: News, Research

Hyponatremia In PWS Is Rare But Fluid Intake Should Still Be Monitored

Hyponatremia is a condition where the sodium (salt) levels in the body are too low. If sodium levels get low enough, the person may become confused, experience a seizure, or even slip into a coma and (rarely) die. A few cases of hyponatremia due to e...

Topics: Research

PWS Clinical Trials Alert

  FPWR maintains the latest clinical trial information so that you can stay abreast of trial opportunities. Some trials require in-person visits while others can be completed remotely.  Some trials are testing new drugs while others are intervention ...

Topics: Research

PATH for PWS Data Supports Positive Findings From DCCR Trial

Data from the PATH for PWS study, an ongoing natural history study of individuals with PWS sponsored by the Foundation for Prader-Willi Research, supports the benefits observed in the open-label study (C602) of DCCR.  Analysis of trial data has shown...

Topics: Research

FDA Advisory Committee to Review Carbetocin (LV101) as PWS Treatment

Levo Therapeutic’s New Drug Application (NDA) for carbetocin as a treatment for PWS has been scheduled for a public meeting of the Psychopharmacologic Drugs Advisory Committee to be held on November 4th, 2021. The Food and Drug Administration (FDA) c...

Topics: Research

Unique MAGEL2 Findings Point to Potential PWS and SYS Genetic Therapy

Dr. Rachel Wevrick and her team have just published a new paper looking at the function of the protein encoded by the MAGEL2 gene, one of the genes in the PWS region of chromosome 15. This is the first-ever study to look at the first part of MAGEL2. ...

Topics: Research

PWS Registry Added 208 Participants In Past Year [INFOGRAPHIC]

The Global PWS Registry continues to grow and strengthen as a valuable resource and research tool for the PWS community. The Registry currently has 1,846 participants. Over the past 12 months (July 2020-July 2021), the Registry has grown by over 12% ...

Topics: Research

New Paper Provides Data on Vision Problems in People with PWS

Thanks to the participation of so many in our community, our team was able to share the largest study ever on eye problems in PWS, using data from the Global PWS Registry. The paper “Incidence of strabismus, strabismus surgeries, and other vision con...

Topics: Research

PWS Clinical Trial Opportunity: Pitolisant

A phase 2 study of Pitolisant is enrolling patients ages 6 to 65  years old to evaluate the safety and impact of an investigational medicine, Pitolisant, for excessive daytime sleepiness, cognition, and behavioral function in people with PWS. A live ...

Topics: Research