Glut1 Deficiency Collective Voices Project
The Glut1 Deficiency Foundation invites you to participate in the Collective Voices Project, the first of its kind research effort to gather a broad range of information about patient and family experiences in the Glut1 Deficiency community. It is an opportunity for you to help shape the future for all of our loved ones as we work to find ways to better understand the disease, ease burdens, and drive research progress towards treatments and cures.
What:
The Glut1 Deficiency Collective Voices Project is a research effort from the Glut1 Deficiency Foundation.
It is a comprehensive patient voice survey capturing experiences in the following areas:
Who:
Why:
The results of this survey will be used to help:
How:
When:
Helpful Information Before You Begin:
Background information needed:
Nearly all questions will be quick and easy to answer without having to look at medical records or think too long and hard about responses. The only exception is a question about the type of mutation if you have had genetic testing. It will be helpful to have a copy of your genetic test report on hand if you have one when you take the survey if possible.
Time commitment:
The estimate of time needed to complete the survey is between 40 and 50 minutes, depending on how some questions are answered. The Qualtrics platform uses logic to display only questions that are relevant to you based on your previous answers. While we understand this is a time commitment, we also ask you to understand how important and valuable this opportunity is to have your voice heard, your experiences captured, and the help you can provide in driving research progress that is most meaningful to patients.
It is likely best to try to complete the survey in one session. However, if you need to leave it for a while and return and finish later, you can pick up where you left off within 14 days of beginning.
Thoroughness:
Please try to answer all the questions as thoroughly as you possibly can. There are options on most questions to customize the answers to best suit your individual experiences if needed. When questions are skipped, pieces of information about your story are missing and the full picture of your experience is less clear.
Only one survey per patient:
If you are a parent/caregiver for someone who has Glut1 Deficiency and you also have the diagnosis yourself, please complete a separate survey for each individual to make sure each of you and your unique experiences and needs are represented. Otherwise, only one survey should be submitted per family. For example, please don't submit a survey done by both the patient and the parent about the same individual.
Data storage and usage:
Your anonymous survey responses will be stored on the Qualtrics platform, which is compliant with HIPAA and GDPR requirements and regulations.
The Glut1 Deficiency Foundation will oversee the data collection, storage, and protection. Study Team members will be responsible for analyzing and interpreting the data and for disseminating the findings.
The anonymous data may be exported for further analysis and shared with other organizations in efforts to better understand needs, experiences, and priorities in the Glut1 Deficiency community so that gaps can be better addressed through planning, programs, support, services, and research.
The anonymous data may be federated, or combined, with other rare disease data sources in the future to look for commonalities and connections across multiple rare disease communities.
Your anonymous data may be used in this and other research and shared with other organizations. You will not share in any commercial value or profit derived from the use of your data, nor will you have special access to any products created because of your participation in this research.
For questions, please contact the Principal Investigators or Study Team Members on this project:
Principal Investigators
Sandra Ojeda, PhD
Science Director - Glut1 Deficiency Foundation
sojeda@G1DFoundation.org
Glenna Steele, MEd
Executive Director - Glut1 Deficiency Foundation
gsteele@G1DFoundation.org
Study Team Members
Adrian Avila, BS
Clinical Research Manager - UT Southwestern Medical Center
adrian.avila@UTSouthwestern.edu
Terry Jo Bichell, PhD
Executive Director - COMBINEDBrain
terryjobichell@combinedbrain.org
Chantal Sanchez, BA
Educational Intern - Glut1 Deficiency Foundation
cmsanchez@G1DFoundation.org
Institutional Review Board
If you have any questions about this research study and do not wish to contact the Glut1 Deficiency Foundation or the Study Team members, you may contact the independent ethics review board (Castle IRB) that reviewed this project at irbteam@castleirb.com.
What:
The Glut1 Deficiency Collective Voices Project is a research effort from the Glut1 Deficiency Foundation.
It is a comprehensive patient voice survey capturing experiences in the following areas:
- the diagnostic odyssey
- medical care
- symptoms
- puberty & adulthood (if applicable)
- development
- ketogenic diets (if applicable)
- other treatments
- therapies & services
- school experiences
- social/emotional impacts
- research priorities
- clinical trial participation perspectives
- family impacts and caregiver issues
- future planning
Who:
- The survey will collect anonymous information about people of any age diagnosed with Glut1 Deficiency who live anywhere in the world.
- People aged 18 and over who have Glut1 Deficiency may take the survey on their own, or their parent/caregiver can help them take the survey or take it on their behalf.
- People under age 18 who have Glut1 Deficiency will need to have the survey completed by an adult parent or caregiver.
- The survey is not open to individuals who do not have a confirmed Glut1 Deficiency diagnosis.
Why:
The results of this survey will be used to help:
- better understand the patient and family experience
- better define the range of symptoms
- identify gaps in treatment and patient care
- identify gaps in knowledge and understanding of this disease
- better understand the burdens of this disease on the patient and the family
- identify the most important components of a future natural history study
- develop and prioritize future service programs
- create and prioritize a patient-led strategic research plan
- develop better and more effective clinical trials for potential future treatments
How:
- Participation is easy!
- This is an online survey using the Qualtrics platform.
- The survey can be taken from any location on both desktop and mobile devices, although some of the question formats may be easiest viewed on a desktop or laptop rather than a phone or tablet.
- Follow the link at the bottom when you are ready to begin.
When:
- The Glut1 Deficiency Collective Voices Project will be open through June 1st.
- Responses from the survey will be grouped together, analyzed, and the overall insights about the patient community will be shared in presentations at both our Scientific and Family meetings this summer and through future open-access sources. Since this is an anonymous survey, no personally identifiable information will be collected or connected to your responses.
Helpful Information Before You Begin:
Background information needed:
Nearly all questions will be quick and easy to answer without having to look at medical records or think too long and hard about responses. The only exception is a question about the type of mutation if you have had genetic testing. It will be helpful to have a copy of your genetic test report on hand if you have one when you take the survey if possible.
Time commitment:
The estimate of time needed to complete the survey is between 40 and 50 minutes, depending on how some questions are answered. The Qualtrics platform uses logic to display only questions that are relevant to you based on your previous answers. While we understand this is a time commitment, we also ask you to understand how important and valuable this opportunity is to have your voice heard, your experiences captured, and the help you can provide in driving research progress that is most meaningful to patients.
It is likely best to try to complete the survey in one session. However, if you need to leave it for a while and return and finish later, you can pick up where you left off within 14 days of beginning.
Thoroughness:
Please try to answer all the questions as thoroughly as you possibly can. There are options on most questions to customize the answers to best suit your individual experiences if needed. When questions are skipped, pieces of information about your story are missing and the full picture of your experience is less clear.
Only one survey per patient:
If you are a parent/caregiver for someone who has Glut1 Deficiency and you also have the diagnosis yourself, please complete a separate survey for each individual to make sure each of you and your unique experiences and needs are represented. Otherwise, only one survey should be submitted per family. For example, please don't submit a survey done by both the patient and the parent about the same individual.
Data storage and usage:
Your anonymous survey responses will be stored on the Qualtrics platform, which is compliant with HIPAA and GDPR requirements and regulations.
The Glut1 Deficiency Foundation will oversee the data collection, storage, and protection. Study Team members will be responsible for analyzing and interpreting the data and for disseminating the findings.
The anonymous data may be exported for further analysis and shared with other organizations in efforts to better understand needs, experiences, and priorities in the Glut1 Deficiency community so that gaps can be better addressed through planning, programs, support, services, and research.
The anonymous data may be federated, or combined, with other rare disease data sources in the future to look for commonalities and connections across multiple rare disease communities.
Your anonymous data may be used in this and other research and shared with other organizations. You will not share in any commercial value or profit derived from the use of your data, nor will you have special access to any products created because of your participation in this research.
For questions, please contact the Principal Investigators or Study Team Members on this project:
Principal Investigators
Sandra Ojeda, PhD
Science Director - Glut1 Deficiency Foundation
sojeda@G1DFoundation.org
Glenna Steele, MEd
Executive Director - Glut1 Deficiency Foundation
gsteele@G1DFoundation.org
Study Team Members
Adrian Avila, BS
Clinical Research Manager - UT Southwestern Medical Center
adrian.avila@UTSouthwestern.edu
Terry Jo Bichell, PhD
Executive Director - COMBINEDBrain
terryjobichell@combinedbrain.org
Chantal Sanchez, BA
Educational Intern - Glut1 Deficiency Foundation
cmsanchez@G1DFoundation.org
Institutional Review Board
If you have any questions about this research study and do not wish to contact the Glut1 Deficiency Foundation or the Study Team members, you may contact the independent ethics review board (Castle IRB) that reviewed this project at irbteam@castleirb.com.
Participating in the Glut1 Deficiency Collective Voices Project is voluntary. By taking the survey, you provide explicit consent for the Glut1 Deficiency Foundation to collect, securely store, and selectively share your anonymous responses for the purposes and goals outlined above.
