Clinical Trials Team

When: Thursday 1-2 ET

Chair: Bob Hebron (daughter is living with ALS), Diane Hoey (lost a friend to ALS), and Daniel McIntyre (lost a friend to ALS)

Mission: The Clinical Trials Team partners with researchers, government agencies, and drug sponsors to ensure access, efficiency and humaneness of ALS therapy development and approval. It collects and distributes information regarding clinical trials to the ALS community.

Goals:  The Clinical Trials team will: 

  • Work with researchers, drug sponsors, and government agencies to incorporate best practices for accessible, effective, and humane clinical trials and expanded access programs.
  • Educate and empower the ALS community to easily find clinical trials. 
  • Create opportunities for people living with ALS (PLWALS), cALS, and advocates to come together to collaborate and share best practices and information.


What we do:

  • Research new and upcoming ALS treatments, clinical trials and expanded access programs. Distribute this information to the broader community via ALS Signal Dashboard and Trial Finder.
  • Identify, track new ALS treatments. Meet with drug sponsors to collect information on clinical trials, discuss clinical trial designs and critical elements that lead to 5 star PaCTD rating.
  • Rate clinical trial designs based on a Patient-Centric Clinical Trial Design (PaCTD) rating system with the purpose of making them more effective and humane.
  • Monitor developments in ALS research and clinical trial designs and meet with various stakeholders to find areas to improve clinical trial design.

What are we working on:

  • Looking for ways to improve clinical trial design 
  • Reviewing clinical trials to provide a PaCTD rating 
  • Identifying, tracking and meeting with drug sponsors to educate them to best practice clinical trials design 
  • Continually monitoring clinical trials worldwide and updating the information on ALS Signal and Trial Finder
  • Asking drug sponsors to post their informed consent forms on clinicaltrials.org 
  • Encouraging qualifying small bio-pharmaceutical companies to apply for funding approved through ACT for ALS


  • Created the Patient-Centric Trial Design (PaCTD) rating system, which evaluates trials based on select trial design elements in three key areas: optimizing access to investigational therapies, advancing science quickly and being patient-friendly.
  • Designed and created ALS Signal: Clinical Research Dashboard  
    • This tool allows people living with ALS, physicians and researchers to see the scope of clinical trials taking place around the world and inspire more informed discussions between people living with ALS and their medical care teams.
  • Rated nine clinical trials using the PaCTD rating system
  • Changed the ALS clinical trial landscape as many drug sponsors and researchers seek the advice of the Clinical Trials Community Team and reference the PaCTD Rating system, even showing slides how their upcoming trials have the 9 elements within the PaCTD Rating system covered
  • Made expanded access programs and open label extensions more prevalent within the clinical trial landscape by working with bio-pharmaceutical companies and clinical trial sites, such as BrainStorm, Healey Platform Trial, Amylyx and Biogen
  • Correspond and meet with an uncountable number of clinical trial sponsors to help make clinical trials more humane, effective and efficient
  • Continue to update, promote and amplify ALS Signal

If you would like to learn about other I AM ALS Community Teams, click here: https://www.iamals.org/action/join-an-i-am-als-community-team/


Bob Hebron

family member of someone living with ALS

Daniel McIntyre

friend of someone we've lost to ALS

Diane Hoey

friend of someone we've lost to ALS

Team Members

Mike Harrington

living with ALS

Cali Orsulak

Partner and caregiver to person living with ALS

Michael Robinson

living with ALS

David Snyder

living with ALS

Layne Oliff

living with ALS

Jill Brattain

a family member of someone we've lost to ALS,
someone who cared for a person we've lost to ALS

Cheryl Kilbane

friend of someone we've lost to ALS

Pete Spencer

friend of someone we've lost to ALS

Rob Faulstich

a family member of someone we've lost to ALS

Dr. Bill Woods

living with ALS

Sue Hiller

a family member of someone living with ALS

Susan Goldstein

a family member of someone living with ALS

Ashley Thombs

a family member of someone living with ALS

Glen Rouse

living with ALS

Christine Gilmore

living with ALS

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