Glut1 Deficiency Foundation
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Special Statement on Clinical Trial Recruitment

The Glut1 Deficiency Foundation is a non-profit 501(c)3 patient and family organization dedicated to educating others about Glut1 Deficiency by creating a forum for sharing support, experiences, resources, and information between patients, families, and healthcare professionals; increasing awareness of and advocacy for Glut1 Deficiency; and supporting and funding researchers as they work for a cure.  The Foundation is honored to be served by world-renowned Glut1 Deficiency and ketogenic diet experts through its Medical Advisory Board. The Foundation strives to fulfill its mission in the best interests of the global Glut1 Deficiency community. 
 
The Foundation has recently been made aware of some activities, both in the United States and abroad, surrounding patient recruitment for an active clinical trials program for pharmaceutical (drug) grade triheptanoin. The protocol for these trials requires that patients wishing to enroll not be on a ketogenic diet, document a 6 week seizure baseline period, and then begin a double blind placebo treatment plan if certain seizure type and frequency benchmarks are met.  
 
The Foundation recognizes that some patients are not compliant on a ketogenic diet or their symptoms are not well controlled.  However, several instances have been reported to us where patient families have been contacted by their own or a different treatment center and offered the opportunity to take their child off a ketogenic diet in order to participate in the trials, even when the diet is effective and established in the patient.  Patients would be required to stop the diet, go without treatment for 6 weeks, document any seizure frequency and type, then enroll in the treatment plan with possibility of a placebo.  
 
It is the view of the Glut1 Deficiency Foundation Board of Directors and Medical Advisory Board that no patient should go without treatment or discontinue an effective one.  We recommend consulting with a member of our Medical Advisory Board or another medical professional with significant expertise in Glut1 Deficiency before proceeding with changes in established treatment methods.
 
The ketogenic diet has been the standard of care for Glut1 Deficiency since the condition was first described over 20 years ago, and it remains the standard of care today with years of clinical and family experience to support its efficacy in treating seizures and many other symptoms associated with Glut1 Deficiency.  Of particular importance, the diet provides nourishment to the brain during the critical childhood periods of brain growth and development.  The Foundation recognizes that the ketogenic diet is not a perfect treatment and supports research leading to better treatments and ultimately a cure.  However, the conduct of clinical trial investigations should not put prospective participants in a position to terminate or avoid an established effective treatment.  
 
The Foundation is dedicated to promoting the wellbeing of each and every Glut1 Deficiency patient.  We respectfully recognize that patients and families are in the best position to make decisions regarding the treatment of their loved ones. Not all patients are alike, and not all situations are the same.  However, we urge families to consider carefully any changes in treatment or participation in studies and trials and to seek the expert guidance of medical professionals well versed in Glut1 Deficiency and in their child’s medical needs.  

Glut1 Deficiency Foundation Board of Directors
Glut1 Deficiency Foundation Medical Advisory Board


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Glut1 Deficiency Foundation
PO Box 737 
Owingsville, KY 40360    
​info@G1DFoundation.org
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Copyright © 2021 Glut1 Deficiency Foundation
  • Home
  • About Glut1 Deficiency
    • What is Glut1 Deficiency?
    • Key Terms in Glut1 Deficiency
    • About the Ketogenic Diet
    • Newly Diagnosed
    • Research >
      • Research Compass
      • Research News
    • Patient Registry
    • Resources >
      • Resource List
      • Videos
      • The Patient Voice
      • Cognition and Learning
      • Family Recommended Specialists
      • COVID-19
      • Patient Stories >
        • Family Stories >
          • Share Your Story
      • Materiales en Español
      • Brochures
  • About G1DF
    • About the Foundation
    • Leadership Team
    • Medical Advisory Board
    • Scientific Advisory Board
    • Educational Events and Exhibits
    • Ways to Help
  • News
    • Glimpses | The G1DF Blog
    • Foundation Newsletters >
      • Summer 2022
      • Spring 2022
      • Winter 2022
      • Fall 2021
      • Summer 2021
      • Spring 2021
      • Winter 2021
      • Fall 2020
      • Summer 2020
      • Spring 2020
      • Winter 2020
      • Fall 2019
      • Summer 2019
      • Spring 2019
      • Winter 2019
      • Fall 2018
      • Summer 2018
      • Spring 2018
      • Winter 2018
      • Fall 2017
      • Summer 2017
      • Spring 2017
      • Winter 2017
  • Conferences and Events
    • 2022 Scientific and Family Conference
    • Conferences and Events
    • Glut1 Gatherings on Zoom
  • Get Involved
    • Family and Professional Networks
    • Volunteer Network
    • UTSW Surveys
    • Sign Up for Our Mailing List
    • Ways to Give
    • Shop to Support
    • Donate
    • Love Some1 with Glut1 >
      • 2022 Love Some1 with Glut1
    • Million Dollar Bike Ride
    • Fundraising >
      • Fundraising Help
      • Host a Fundraiser
  • Donate