Glut1 Deficiency Foundation
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Adult Patient Survey

We have collaborated with Dr. Mackenzie Cervenka, an adult neurologist at Johns Hopkins Hospital and member of the Glut1 Deficiency Foundation's Medical Advisory Board, to create a survey to gather information and insights into the adult experience (patients aged 18 and older). Many patients diagnosed in childhood are now adults or are making the transition, and there is a growing number of patients who are only just getting their diagnosis in adulthood.  New challenges are being identified and there are many new areas that need to be further explored.  We are hoping to help fill some of the gaps in knowledge and understanding and to be able to help everyone - families, dietitians, doctors, researchers, the G1DF, and other members of support systems - better meet needs.
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Information from this IRB approved survey will be used to plan some of the adult patient topics at our 2019 conference, and Dr. Cervenka will be presenting the findings.  She also plans to publish the results of this research in a peer reviewed journal so that the information can be widely available to anyone who is searching for more insights into the adult experience.  The G1DF will use the knowledge to identify areas that need further attention and to create special resources for adult patients and those caring for them.

This survey is part of a specially funded project from the Patient Centered Outcomes Research Institute (PCORI), which will help provide conference support and adult patient travel stipends to attend. 

Your help is critical in this important research initiative.  Please find two editions of the survey below - choose the one most appropriate for your situation.  One version is for patients to complete themselves and one is for caregivers/parents to complete if the patient isn't able to on his or her own.   The survey is open to patients aged 18 and older from anywhere in the world.
patient survey
caregiver survey


​You also have options for submitting the completed survey: 
1.  Complete the fillable PDF online, save the document, and email the survey.  (easiest with a newer version of Adobe)
2.  Complete the fillable PDF online, print it, and mail the document in an envelope.
3.  Print the document, complete by hand, scan and email it.
4.  Print the document, complete by hand, mail the document in an envelope.
5.  If you have difficulties with any of the above, please contact us and we can mail a printed copy to you in an envelope, with a
     self-addressed, stamped envelope for you to return it in when you are finished.

In order to keep the survey responses and participants anonymous for this research project, the Glut1 Deficiency Foundation will receive the responses and submit to Dr. Cervenka, ensuring the patient or caregiver is not identified in any way. The G1DF will not collect, save, or share participant information in any way.

​Completed surveys may be emailed or mailed to:
​

      info@G1DFoundation.org
​      PO Box 737  Owingsville, KY 40360  USA  ​

Thank you for your help!


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Glut1 Deficiency Foundation
PO Box 737 
Owingsville, KY 40360    
​info@G1DFoundation.org
​
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​​Resources and information on this website are not intended as medical care or advice.
​​Please consult with your healthcare provider.
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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 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