Dear Researchers,
On behalf of CURE SYNGAP1 (FKA SynGAP Research Fund) and Citizen Health, we would like to invite you to sign up to access SYNGAP1 data on Citizen. As an academic researcher, you are able to access de-identified, standardized, normalized summaries of each participating patients’ medical records including genetic test results, EEG results and much more from their medical record. Every patient in the dataset has a confirmed Pathogenic or Likely Pathogenic genetic diagnosis. Right now there is data for over 100 patients available and we are continually adding more.
From Citizen Health, we have a Researcher Agreement template and Cat 8 IRB template. Once you have signed the agreement, returned it to Citizen, and submitted the Cat 8 to your IRB, Citizen can share data.
Please contact us if you have any questions.
- Mike Graglia: mike@cureSYNGAP1.org – Founder and Director at CURE SYNGAP1; SYNGAP1 dad.
- Lauren Perry: lauren@cureSYNGAP1.org – Operations Manager at CURE SYNGAP1; SYNGAP1 mom.
~Thank you for all your work and interest in SYNGAP1~