Glut1 Deficiency Foundation
  • Home
  • About Glut1 Deficiency
    • What is Glut1 Deficiency?
    • Key Terms in Glut1 Deficiency
    • About the Ketogenic Diet
    • Newly Diagnosed
    • Research >
      • Research News >
        • Research Grant Program >
          • Research Grant Award Recipients
      • Recent Publications
      • Patient Registry
    • Resources >
      • Cognition and Learning
      • Videos
      • Resource List
      • Family Recommended Specialists
      • Patient Stories >
        • Stories >
          • Emily
          • Bobby
          • Lilly
          • Allison
          • Katie
          • Tessa
          • Justin
          • Whitney
          • Ryan
          • Erik
          • Pattygrace
          • Chris
          • Sam
          • Collette
          • Phil
          • Joshua
          • DeAndre
          • Matt
          • Jayden
          • Brittany
          • Macie
          • Braden
          • Dalton
          • Jordan
          • Joelle
          • Sabrina
          • Thomas
          • Haley
          • Reed
          • Ben
          • Parys
          • Ronnie-Louise
          • Colin
          • Nathan
          • Lee
          • Dominic
          • Raina
          • Dylan
          • Brayden
          • Elli
          • Jacob
          • Rian
          • Hailey
          • Olivia
          • Addie
          • Drake
        • 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
    • COVID-19
    • CZI Rare As One
    • Foundation Newsletters >
      • 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
    • Conferences
    • 2021 Conference - San Diego
    • 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 >
      • 2021 Love Some1 video
      • 2021 Love Some1 with Glut1
    • Million Dollar Bike Ride
    • Fundraising >
      • Fundraising Help
      • Host a Fundraiser
  • Donate

Patient Registry


Picture
www.G1DRegistry.org
This registry is being developed for several reasons.  Very little is known about the natural history of Glut1 Deficiency. By collecting information about the individual experiences of patients with G1D, the researchers hope to develop a better understanding of the course of this disorder. The researchers also hope that by developing a more complete understanding of G1D they will be better able to diagnose and treat it.
​
By filling out the online questionnaire, you will be contributing valuable information about this disease that will guide researchers as they search for therapies and improved diagnostics. Your responses will also help researchers understand what is important to you as a patient or patient caregiver. This information will help guide future research and program development.

Dr. Juan Pascual at UT Southwestern Medical Center is completing a new analysis of the G1D Patient Registry. The Registry now includes extensive information on hundreds of anonymous patients worldwide and continues to prove very helpful to better understand G1D as reflected in a recent, widely-read peer-reviewed free-access publication.

Issues such as G1D manifestations, treatment efficacy rates, potential treatments, side effects or long term development and other outcomes under the various treatments are all captured by the Registry. The Registry was developed because this type of global information is not easily available by any other means. However, participation by everyone is essential so that the questions can be addressed with sufficient confidence. In order to complete the next analysis, currently underway, Dr Pascual is requesting that families who have entered incomplete data or have new developments to share please revise and update their entries.  New families are also strongly encouraged to register. Translation of the Registry into other languages is available here.
Picture
Picture

Join OUr Networks

Picture
Picture
Picture

Picture

Glut1 Deficiency Foundation
PO Box 737 
Owingsville, KY 40360    
​info@G1DFoundation.org
​
Contact Us

​​Resources and information on this website are not intended as medical care or advice.
​​Please consult with your healthcare provider.
Picture
Mailing List
​
Shop to Support
Privacy Policy
Terms of Use

Cookie Statement
                    

Picture
Picture
Picture
Picture
Picture
Picture

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 News >
        • Research Grant Program >
          • Research Grant Award Recipients
      • Recent Publications
      • Patient Registry
    • Resources >
      • Cognition and Learning
      • Videos
      • Resource List
      • Family Recommended Specialists
      • Patient Stories >
        • Stories >
          • Emily
          • Bobby
          • Lilly
          • Allison
          • Katie
          • Tessa
          • Justin
          • Whitney
          • Ryan
          • Erik
          • Pattygrace
          • Chris
          • Sam
          • Collette
          • Phil
          • Joshua
          • DeAndre
          • Matt
          • Jayden
          • Brittany
          • Macie
          • Braden
          • Dalton
          • Jordan
          • Joelle
          • Sabrina
          • Thomas
          • Haley
          • Reed
          • Ben
          • Parys
          • Ronnie-Louise
          • Colin
          • Nathan
          • Lee
          • Dominic
          • Raina
          • Dylan
          • Brayden
          • Elli
          • Jacob
          • Rian
          • Hailey
          • Olivia
          • Addie
          • Drake
        • 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
    • COVID-19
    • CZI Rare As One
    • Foundation Newsletters >
      • 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
    • Conferences
    • 2021 Conference - San Diego
    • 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 >
      • 2021 Love Some1 video
      • 2021 Love Some1 with Glut1
    • Million Dollar Bike Ride
    • Fundraising >
      • Fundraising Help
      • Host a Fundraiser
  • Donate