Skip to content
  • 2026 CONFERENCE
  • CAREGIVER SUPPORT
  • PODCAST
  • CONNECT: Family Support
    • New Diagnosis
    • Support Programs
      • Family Support
      • First 100 Days
      • Caregiver Support Groups
    • 2026 Conference
    • Family Stories
    • Wall of Remembrance
    • Resource Library
  • CARE: About PMS
    • What is Phelan-McDermid Syndrome?
    • How Phelan-McDermid Syndrome is Diagnosed
    • Medical Issues & Clinical Care
    • Phelan-McDermid Syndrome Clinics
    • PMS Neuropsychiatric Consultation Group – ECHO
    • Genetic Counselors
    • PMS By The Numbers
  • CURE: Research
    • Strategic Priorities
    • Funded Research
      • Research Grants Program
    • Family Participation Opportunities
      • Participation in Research
      • Clinical Trials in Phelan-McDermid Syndrome
    • Drugs In Development
    • For Research Partners
    • PMS DataHub
  • Foundation
    • About Us
    • Our History
    • Leadership
    • Our Financials
  • Get Involved
    • Sponsorships
    • Fundraise
    • Advocate
    • Events
    • Volunteer
  • News & Updates
  • Contact Us
  • CONNECT: Family Support
    • New Diagnosis
    • Support Programs
      • Family Support
      • First 100 Days
      • Caregiver Support Groups
    • 2026 Conference
    • Family Stories
    • Wall of Remembrance
    • Resource Library
  • CARE: About PMS
    • What is Phelan-McDermid Syndrome?
    • How Phelan-McDermid Syndrome is Diagnosed
    • Medical Issues & Clinical Care
    • Phelan-McDermid Syndrome Clinics
    • PMS Neuropsychiatric Consultation Group – ECHO
    • Genetic Counselors
    • PMS By The Numbers
  • CURE: Research
    • Strategic Priorities
    • Funded Research
      • Research Grants Program
    • Family Participation Opportunities
      • Participation in Research
      • Clinical Trials in Phelan-McDermid Syndrome
    • Drugs In Development
    • For Research Partners
    • PMS DataHub
  • Foundation
    • About Us
    • Our History
    • Leadership
    • Our Financials
  • Get Involved
    • Sponsorships
    • Fundraise
    • Advocate
    • Events
    • Volunteer
  • News & Updates
  • Contact Us
Join
Donate
  • 2026 Conference
  • CONNECT: Family Support
    • New Diagnosis
    • Programs
      • Family Support
      • “First 100 Days”
      • Caregiver Support Groups
    • Family Stories
    • Wall of Remembrance
    • Resource Library
  • CARE: About PMS
    • What is Phelan-McDermid syndrome?
    • How PMS is Diagnosed
    • Medical Issues & Clinical Care
    • Phelan-McDermid Syndrome Clinics
    • PMS Neuropsychiatric Consultation Group – ECHO
    • About Genetic Counseling
    • PMS By The Numbers
  • CURE: Research
    • Strategic Priorities
    • Funded Research
      • Research Grants Program
    • Family Participation Opportunities 
      • Participation in Research
      • Clinical Trials
    • Drugs In Development
    • For Research Partners
    • PMS Datahub
  • Foundation
    • About Us
    • Our History
    • Leadership
    • Our Financials
    • PMSF News
    • Contact Us
  • Get Involved
    • Sponsorship Opportunities
    • Fundraise
    • Advocate
    • Events
    • Volunteer
  • Join
  • Donate
Why Sharing Clinical Trial Experiences Can Harm Research

Why Sharing Clinical Trial Experiences Can Harm Research

By: Lauren Schmitt, PhD, Chief Science Officer, PMSFDate: December 22, 2025 How Families Can Help Protect the Path to New Treatments…

Continue ReadingWhy Sharing Clinical Trial Experiences Can Harm Research

Contact Us

8 Sorrento Drive, Osprey, FL 34229

phone: 941-485-8000

fax: 941-220-6605

email: info@pmsf.org

Tax ID: 04-3673104

Engage With Us

  • News & Blog Posts
  • Resource Library
  • Events
  • Website Feedback
  • Join Our Membership

Connect With Us

Facebook-f Twitter Youtube Instagram

Translate

Financial Conflict of Interest

Privacy Policy

Charity Disclosures
Copyright © 2024 Phelan-McDermid Syndrome Foundation. All rights reserved. Any information provided to members or the general public is provided for educational purposes only, and is not intended to replace professional advice from doctors or therapists.

Log in

Become a part of our community!
Forgot your password? Get help

Reset password

Recover your password
A password reset link will be e-mailed to you.
Back to
Login
×
Close Panel

By continuing to use this website, you consent to the use of cookies in accordance with our Cookie Policy.

Accept