About this survey

If you would like this survey translated into another language, please email CureGRIN’s research coordinator Meagan Collins at meagan@curegrin.org. 

CureGRIN believes scientific research should be driven by patients and their families. This is your opportunity to help shape our path forward and ensure it represents the needs of your child. Results will be used to help define our priorities and how we allocate resources over the next three to five years.  

If your child is able, we encourage them to assist you in filing out this survey—though we understand this is not realistic for many people with GRIN Disorder. One survey per family please. 

Thank you so much for your input as we look at how we can accelerate the development of treatments and cures for GRIN Disorder and better understand what is most important in these new therapies from a patient family perspective. 

Your responses will be kept confidential, but aggregate results will be published on our website and shared with our community of families, researchers and clinicians. Responses will be stored in CureGRIN’s secure cloud storage with Microsoft. 

By submitting responses to this survey you provide explicit consent for CureGRIN Foundation to access and securely store your responses in order to accelerate research towards cures and therapies for GRIN Disorder. This data will be used A) To identify top research priorities B) To compile a database of GRIN variants and symptoms, and c) For other purposes for which you have provided consent in questions 6, 9, and 20 -23. You can withdraw consent at any time.

We will be following up the survey with focus groups and / or 1:1 surveys over Zoom so please let us know in the survey below if this is something you would participate in. 

If you have any questions about this survey, please contact CureGRIN’s research coordinator Meagan Collins at meagan@curegrin.org. 

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* 1. GRIN patient’s first name:

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* 2. Month of GRIN patient’s birth

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* 3. Year of GRIN patient’s birth

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* 4. Full name of GRIN parent or primary Caregiver No. 1

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* 5. Email of GRIN parent or primary caregiver No. 1

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* 6. Keep me (parent / caregiver No. 1) up to date about CureGRIN, GRIN Disorder research, and opportunities to participate in research and trials.

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* 7. Keep me (parent / caregiver No. 1) up to date about CureGRIN, GRIN Disorder research, and opportunities to participate in research and trials.

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* 8. Full name of GRIN parent or primary caregiver No. 2

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* 9. Full email of GRIN parent or primary caregiver No. 2

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* 10. Keep me (parent / caregiver No. 2) up to date about CureGRIN, GRIN Disorder research, and opportunities to participate in research and trials.

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* 11. Country

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* 12. State / Province if applicable

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* 13. What gene is involved in your child’s disease?

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* 14. Variant: This will be written on your child’s genetics report with a code that starts with a p. and / or a c. If both are listed, please include both. 
P. may look something like p.G620R, p. Gly620Arg or p.Ala758_Thr760del 
C. may look something like c.858 G>A
If you need help identifying your child’s variant, you can email us at meagan@curegrin.org for assistance. 

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* 15. Patient's Sex

T