Select your language below to register for the GRI Census
We have launched a global GRI Census to collect data from families to advance our search for treatments and cures for GRI Disorders.
The GRI Census is open to parents and caregivers of an individual with a confirmed diagnosis of a GRI Disorder (GRIN1, GRIN2A, GRIN2B, GRIN2D, GRIN3A, GRIA1, GRIA2, GRIA3, GRIA4, GRIK2, GRIK5, GRID1, GRID2).
When can I complete the census?
GRI Census will remain open with no end date. You are able to register at any time!
How will completing the GRI Census help to advance the search for treatments and cures?
Your child’s gene will be counted. Bigger recorded populations could boost grants and interest from researchers and biotech.
Your child’s variant will be counted. Variants with known human populations could be more likely to be studied in cell and animal models.
Your child’s location will be counted. Clinical trials are more likely to take place in countries and regions with existing patient populations.
Your child’s symptoms will be counted. The most common symptoms should be prioritized for treatment.
Your priorities will be counted. The treatment priorities that matter most to patient families should be prioritized for treatment.
What materials do I need to complete the GRI Census?
The census will ask questions about the person in your family with a GRI Disorder, including symptoms and which medications have been helpful. You may be able to answer many of these questions from memory. If your child is over 18, you will need to upload a document showing you are the legally authorized representative for an adult with a GRI Disorder, such as a guardianship document or a power of attorney document. We will also ask you to upload your child’s genetic report so we can confirm their variant. While this is not required when you initially fill out the census, it will simplify the process if you have it ready to upload.
If you share the gene with your child, you may fill out a separate survey if it is also disease-causing for you. If you has no symptoms or issues and just the gene, you do not need to fill it out for you.
How will the data be used?
Before you complete the survey, you will need to read and complete a consent form that outlines potential risks and clarifies what we will and will not do with the data you provide.
Is the GRI Census available in other languages?
GRI Census will be available in English, French, Spanish, German, Italian, Portuguese and Dutch. To request that the GRI Census be translated into other languages, please email info@curegrin.org.
Thanks to our partners!
Cure GRI Disorders
You can help!
You can help us find a cure for GRI Disorders worldwide.
CureGRIN Foundation is a nonprofit, tax-exempt organization as defined in section 501(c)(3) of the Internal Revenue Code and, as such, contributions to CureGRIN are tax-deductible. Fund research. Save a life.
