Adult Patient Survey
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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.
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.
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
