Request Citizen Natural History Study (NHS) Data
Access comprehensive, de-identified 5p- syndrome patient data for your research through our partnership with Citizen. This standardized dataset provides researchers with valuable insights into the 5p- syndrome patient population, supporting evidence-based research and treatment development.
What's Available
Current Dataset: Over 100 patients with confirmed Pathogenic or Likely Pathogenic genetic diagnoses
Data Includes:
De-identified, standardized medical record summaries
Genetic test results
EEG results
Comprehensive medical history data
Normalized clinical information
Note: Our dataset is continuously growing as more families participate.
Access Process
We provide the following resources to streamline your access:
Researcher Agreement template from Citizen
Category 8 IRB template for institutional review
Direct support throughout the application process
Steps to Access:
Contact us to request the Researcher Agreement template
Complete and return the signed agreement to Citizen
Submit the Category 8 IRB template to your institutional review board
Upon approval, Citizen will share the requested data
Contact Information
For questions or to begin the access process, please reach out:
Megan Leston, Founder and President
Cri du Chat Research Foundation
Megan.Leston@criduchatresearch.org
JC Leston, Co-founder
Cri du Chat Research Foundation
JC.Leston@criduchatresearch.org
Thank you for your work and interest in 5p- syndrome research. We look forward to supporting your research efforts.