Podbean logo
  • Discover
  • Podcast Features
    • Podcast Hosting

      Start your podcast with all the features you need.

    • Podbean AI Podbean AI

      AI-Enhanced Audio Quality and Content Generation.

    • Blog to Podcast

      Repurpose your blog into an engaging podcast.

    • Video to Podcast

      Convert YouTube playlists to podcasts, videos to audios.

  • Monetization
    • Ads Marketplace

      Join Ads Marketplace to earn through podcast sponsorships.

    • PodAds

      Manage your ads with dynamic ad insertion capability.

    • Apple Podcasts Subscriptions Integration

      Monetize with Apple Podcasts Subscriptions via Podbean.

    • Live Streaming

      Earn rewards and recurring income from Fan Club membership.

  • Podbean App
    • Podcast Studio

      Easy-to-use audio recorder app.

    • Podcast App

      The best podcast player & podcast app.

  • Help and Support
    • Help Center

      Get the answers and support you need.

    • Podbean Academy

      Resources and guides to launch, grow, and monetize podcast.

    • Podbean Blog

      Stay updated with the latest podcasting tips and trends.

    • What’s New

      Check out our newest and recently released features!

    • Podcasting Smarter

      Podcast interviews, best practices, and helpful tips.

  • Popular Topics
    • How to Start a Podcast

      The step-by-step guide to start your own podcast.

    • How to Start a Live Podcast

      Create the best live podcast and engage your audience.

    • How to Monetize a Podcast

      Tips on making the decision to monetize your podcast.

    • How to Promote Your Podcast

      The best ways to get more eyes and ears on your podcast.

    • Podcast Advertising 101

      Everything you need to know about podcast advertising.

    • Mobile Podcast Recording Guide

      The ultimate guide to recording a podcast on your phone.

    • How to Use Group Recording

      Steps to set up and use group recording in the Podbean app.

  • All Arts Business Comedy Education
  • Fiction Government Health & Fitness History Kids & Family
  • Leisure Music News Religion & Spirituality Science
  • Society & Culture Sports Technology True Crime TV & Film
  • Live
  • How to Start a Podcast
  • How to Start a Live Podcast
  • How to Monetize a podcast
  • How to Promote Your Podcast
  • How to Use Group Recording
  • Log in
  • Start your podcast for free
  • Podcasting
    • Podcast Features
      • Podcast Hosting

        Start your podcast with all the features you need.

      • Podbean AI Podbean AI

        AI-Enhanced Audio Quality and Content Generation.

      • Blog to Podcast

        Repurpose your blog into an engaging podcast.

      • Video to Podcast

        Convert YouTube playlists to podcasts, videos to audios.

    • Monetization
      • Ads Marketplace

        Join Ads Marketplace to earn through podcast sponsorships.

      • PodAds

        Manage your ads with dynamic ad insertion capability.

      • Apple Podcasts Subscriptions Integration

        Monetize with Apple Podcasts Subscriptions via Podbean.

      • Live Streaming

        Earn rewards and recurring income from Fan Club membership.

    • Podbean App
      • Podcast Studio

        Easy-to-use audio recorder app.

      • Podcast App

        The best podcast player & podcast app.

  • Advertisers
  • Enterprise
  • Pricing
  • Resources
    • Help and Support
      • Help Center

        Get the answers and support you need.

      • Podbean Academy

        Resources and guides to launch, grow, and monetize podcast.

      • Podbean Blog

        Stay updated with the latest podcasting tips and trends.

      • What’s New

        Check out our newest and recently released features!

      • Podcasting Smarter

        Podcast interviews, best practices, and helpful tips.

    • Popular Topics
      • How to Start a Podcast

        The step-by-step guide to start your own podcast.

      • How to Start a Live Podcast

        Create the best live podcast and engage your audience.

      • How to Monetize a Podcast

        Tips on making the decision to monetize your podcast.

      • How to Promote Your Podcast

        The best ways to get more eyes and ears on your podcast.

      • Podcast Advertising 101

        Everything you need to know about podcast advertising.

      • Mobile Podcast Recording Guide

        The ultimate guide to recording a podcast on your phone.

      • How to Use Group Recording

        Steps to set up and use group recording in the Podbean app.

  • Discover
  • Log in
    Sign up free
PWS United

PWS United

Business:Non-Profit

Ep10 Clinical Trials

Ep10 Clinical Trials

2024-10-01
Download

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:

africke@pwsausa.org

communications@pwsausa.org

 

 

view more

More Episodes

Ep40 Pulse 122: PWS Awareness Month, Family Conference Registration Closed, Interview with Destiny Pacha, VYKAT XR Townhall Summary
2025-05-06 58
Ep39 Unlocking a New Path to Treat Hyperphagia in PWS: A Conversation with Aardvark Therapeutics
2025-04-29 117
Ep38 Pulse 121: Occupational Therapy Month, Conference Cap, Awareness Month Proclamation, Financial Security Webinar
2025-04-22 65
Ep37 Ask Nurse Lynn: Growth Hormone, Skin-Picking, GLP-1s
2025-04-15 107
Ep36 Pulse 120: Annual Report, VYKAT XR Webinar, Awareness Proclamation Toolkit, Sibling Guide
2025-04-08 91
Ep35: PWS and Sibling Support
2025-04-01 129
Ep34 Pulse 119: Awareness, Staying Cool at Conference, Sibling Stories, Clinical Trial with Tirzepatide
2025-03-25 79
Ep33: Special Education and the Department of Ed.
2025-03-18 107
Ep32Pulse 118: Harmony Webinar, Hot Stove Dinner, State Advocacy, TREND GI Report, Community Publications
2025-03-11 71
Ep31 PWS Awareness Starts Here: Fundraising with Hope United & United We Brunch
2025-03-04 114
Ep30 Pulse 117: Commitment to Advocacy, Rare Disease Week, 50th Gala Tickets, Calls to Action
2025-02-25 124
Ep 29: Pioneers in PWS - Residential Care and the Professional Providers Advisory Board
2025-02-18 115
Ep28 Pulse 116: Growth Hormone Pioneer, Advocacy Wins, TREND Report on Behavior, Job Announcement
2025-02-11 84
Ep27: Advocacy with Terry Wilcox from Patients Rising
2025-02-04 90
Ep26: Clinical Trial Perspectives Part 1
2025-01-28 131
Ep25 Pulse 115: Countdown to Conference, Hot Stove Dinner, Changes at FDA, Volunteer Spotlight, Sertraline
2025-01-21 88
Ep24 TREND & PWS Connect
2025-01-14 78
Ep 23 Pulse 114: Celebrating 50 Years of Hope, Advocacy Class, PWSA Egypt, Journeys Project on Discord, Community Stories
2025-01-07 81
Ep22 Pulse 113: Marathon Runner, Inclusive Advocacy, Art Share Extension, PWS in Adulthood, The Holidays
2024-12-24 98
Ep21 Meet the PWSA | USA Staff
2024-12-17 125
  • ←
  • 1
  • 2
  • →
012345678910111213141516171819

Get this podcast on your
phone, FREE

Download Podbean app on App Store Download Podbean app on Google Play

Create your
podcast in
minutes

  • Full-featured podcast site
  • Unlimited storage and bandwidth
  • Comprehensive podcast stats
  • Distribute to Apple Podcasts, Spotify, and more
  • Make money with your podcast
Get started

It is Free

  • Podcast Services

    • Podcast Features
    • Pricing
    • Enterprise Solution
    • Private Podcast
    • The Podcast App
    • Live Stream
    • Audio Recorder
    • Remote Recording
    • Podbean AI
  •  
    • Create a Podcast
    • Video Podcast
    • Start Podcasting
    • Start Radio Talk Show
    • Education Podcast
    • Church Podcast
    • Nonprofit Podcast
    • Get Sermons Online
    • Free Audiobooks
  • MONETIZATION & MORE

    • Podcast Advertising
    • Dynamic Ads Insertion
    • Apple Podcasts Subscriptions
    • Switch to Podbean
    • YouTube to Podcast
    • Blog to Podcast
    • Submit Your Podcast
    • Podbean Plugins
    • Developers
  • KNOWLEDGE BASE

    • How to Start a Podcast
    • How to Start a Live Podcast
    • How to Monetize a Podcast
    • How to Promote Your Podcast
    • Mobile Podcast Recording Guide
    • How to Use Group Recording
    • Podcast Advertising 101
  • Support

    • Support Center
    • What’s New
    • Free Webinars
    • Podcast Events
    • Podbean Academy
    • Podbean Amplified Podcast
    • Badges
    • Resources
  • Podbean

    • About Us
    • Podbean Blog
    • Careers
    • Press and Media
    • Green Initiative
    • Affiliate Program
    • Contact Us
  • Privacy Policy
  • Cookie Policy
  • Terms of Use
  • Consent Preferences
  • Copyright © 2015-2025 Podbean.com