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.

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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.

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Access Process

We provide the following resources to streamline your access:

  1. Researcher Agreement template from Citizen

  2. Category 8 IRB template for institutional review

  3. Direct support throughout the application process

Steps to Access:

  1. Contact us to request the Researcher Agreement template

  2. Complete and return the signed agreement to Citizen

  3. Submit the Category 8 IRB template to your institutional review board

  4. 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.