Request Citizen Natural History Study (NHS) Data
Dear Researchers,
On behalf of Cri du Chat Research Foundation and Citizen, we would like to invite you to sign up to access 5p- syndrome 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 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.
Megan Leston: info@criduchatresearch.org – Founder and President of Cri du Chat Research Foundation
JC Leston: jleston@gmail.com- Co-founder of Cri du Chat Research Foundation
Thank you for all your work and interest in 5p- Syndrome