Written by: Keith McArthur (CureGRIN Executive Director)

In just one week, nearly 150 families representing 10 genes and 16 countries have completed and submitted the GRI Census.

While we don’t have enough data to validate and analyze the responses yet, we’re pleased to present our first summary of who is filling out the questionnaire.

More than half (55%) of respondents are from the United States, followed by the United Kingdom (9%). Canada, Australia and several European countries are also well represented in the first week. 

Here’s the count for every country with at least three respondents.

Families with GRIN2B have been leading the charge to date in filling in surveys. Here’s the population by gene with at least three families:

There’s still time to be included in the GRI Census. Here are links to the currently translated versions.

Here are five ways completing the GRI Census may help to advance the search for treatments and cures:

1. Your child’s gene will be counted. Bigger recorded populations should boost grants and interest from researchers and biotech.
2. Your child’s variant will be counted. Variants with known human populations should be more likely to be studied in cell and animal models.
3. Your child’s location will be counted. Clinical trials are more likely to take place in countries and regions with existing patient populations.
4. Your child’s symptoms will be counted. The most common symptoms should be prioritized for treatment.
5. Your priorities will be counted. The treatment priorities that matter most to patient families should be prioritized for treatment.

For more information, please see our blog post which includes questions and answers about GRI Census.