As research and treatment options for the PWS community continue to grow, we wanted to take a closer look at clinical trials, what are they, how are they run, what trials are available for PWS families, and how you can get involved. We hear personal perspectives from families and begin the journey of one family's first foray into a particular trial in the PWS community and how they moved past their years of skepticism to finally come to the decision to enroll. This episode, along with our Special Edition Pulse from September 2024, sheds light on the growing world of PWS clinical trials in hopes of helping families make more informed decisions. 

LINKS

How We Got Here - Prader-Willi Syndrome Association | USA (pwsausa.org)

The Screening Appointment - Prader-Willi Syndrome Association | USA (pwsausa.org)

A Parent's Perspective on their Child's Clinical Trial - Prader-Willi Syndrome Association | USA (pwsausa.org)

Clinical Trials - Prader-Willi Syndrome Association | USA (pwsausa.org)

Trials Currently Enrolling (as of podcast publication date):

TEMPO PWS Clinical Study For Prader-Willi Syndrome - Enroll Today (tempopwsstudy.com)

Enrolling now VNS4PWS (fpwr.org)

Home - COMPASS PWS STUDY

Cannabidivarin (CBDV) vs. Placebo in Children With Autism Spectrum Disorder (ASD) | Montefiore Einstein Clinical Trials

Clinical Trials Not Currently Enrolling (as of podcast publication date):

Pipeline – Aardvark Therapeutics

VOYAGE Study Overview (pwsausa.org)

Our Science – Soleno Therapeutics

Email your PWS Clinical Trial Experience to:

[email protected]

[email protected]

Intro Music: https://www.bensound.com/; License certificate #2242442