CureGRIN Foundation’s Post

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Yesterday we launched a global GRI Census to collect data from families to advance our search for treatments and cures for GRI Disorders. The 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). You can access the census here: https://lnkd.in/gd63Mh_V The census is currently available in 6 languages- English, French, German, Spanish, Portuguese, and Italian. Dutch will be available soon. The global GRI Census is designed to help increase our community’s chances for clinical trials and drug development. Information from the Census is helpful for biotechnology and pharmaceutical companies as they consider adding GRI Disorders to their pipeline. A huge barrier to learning more about GRI Disorders is the challenge of finding enough people eligible to participate in research studies. The more people with a GRI Disorder we can find, the more powerful the results! Please know that your data and any identifying information are kept confidential. The census is stored in a highly secure data storage system that meets national and international regulatory requirements for conducting clinical trials, including HIPAA and GDPR. Your story and experiences are valuable resources, not only for other GRI families, but for researchers and biotech companies. If you have any questions, want to request a translation, or trouble accessing GRI Census, please email us at info@curegrin.org. #GRIN1 #GRIN2A #GRIN2B #GRIN2D #GRIN3A #GRIA1 #GRIA2 #GRIA3 #GRIA4 #GRID #GRIK2 #GRIK5

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Sonya Reinhardt

Managing Director, Energy and Sustainability

1mo

An incredible global effort - completed ours!

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