Research

improving quality of life.

Researchers around the world are working hard to understand the complexities of Prader-Willi syndrome and develop medical and therapeutic interventions that improve the quality of life of the individual with PWS and those around him.

Prader-Willi California Foundation looks for every opportunity to support PWS research and we encourage families to participate in PWS research studies as well. Join the GLOBAL PWS REGISTRY so that researchers around the world have access to a database on information about PWS.

Explore this section to find research opportunities for your family.

Pitolisant Research Study Seeking Participants

We are currently enrolling for a research study to evaluate the effectiveness of Pitolisant in treating excessive daytime sleepiness in patients with Prader-Willi syndrome, ages 6 to 65 years old. If you are interested to see if you qualify or would like to learn more about this study, please email me (sravaei@smclinicaltrials.com) with your name and number and I will contact you directly. All costs related to travel to our clinic will be paid for (including flights, hotels, meals as required), and no out-of-pocket costs to you are expected. I have also attached a document that describes our study in more detail. Sincerely, Sean Ravaei, Clinical Research Coordinator.

Research Study Recruiting PWS Individuals Ages 6 – 65

Harmony Biosciences, a pharmaceutical company dedicated to developing innovative therapies for patients living with rare neurological disorders who have unmet medical needs, has an ongoing Phase 2 clinical trial to evaluate the safety and efficacy of pitolisant, an investigational medicine for excessive daytime sleepiness, behavioral symptoms, and cognitive function in patients with Prader-Willi syndrome. There are 3 trial sites in California that are currently enrolling patients with PWS ages 6-65. If you are interested in participating in this trial or if you’d like to learn more, please contact the site’s coordinator or reach out to Harmony at clinicaltrials@harmonybiosciences.com. Thank you!

Rady Children’s Hospital – San Diego
San Diego, California, United States, 92123
Contact: Janelle Celso 858-576-1700 ext 220011 | jcelso@rchsd.org
Principal Investigator: Rakesh Bhattacharjee, MD

Sleep Medicine Specialists of California
San Ramon, California, United States, 94583
Contact: Jenneca Lund 925-415-5353  jlund@sleepmds.com
Principal Investigator: Haramandeep Singh, MD

Santa Monica Clinical Trials
Santa Monica, California, United States, 90404
Contact: Maha Kazim (310) -586-0843 Ext. 103  mkazim@smclinicaltrials.com
Principal Investigator: Daniel Norman, MD

A number of organizations around the world host PWS research conferences.  Please visit the websites below to get the most current information.

PRADER-WILLI SYNDROME ASSOCIATION (USA)

INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION

FOUNDATION FOR PRADER-WILLI RESEARCH

FOUNDATION FOR PRADER-WILLI RESEARCH CANADA