Downloads

Additional documents available for download

• Privacy and Ethics

  NARSE ethics vote at Charité (DE only)
  Download (PDF, 383 KB)

  NARSE ethics application Charité (DE only)
  Download (PDF, 195 KB)

  NARSE data protection olicy with data protection impact assessment (DE only)
  Download (PDF, 2,6 MB)

  NARSE TMF data protection vote (DE only)
  Download (PDF, 267 KB)

• Data Collection and Use

  NARSE dataset (DE only)
  Download (PDF, 156 KB)

  NARSE terms of use (DE only)
  Download (PDF, 389 KB)

  NARSE User Guide
  Download (PDF, 7 MB)

  NARSE reporting agency agreement (DE only)
  Download (PDF, 478 KB)

  NARSE list of registrants (appendix to the reporting agency agreement) (DE only)
  Download (PDF, 173 KB)

  NARSE form (DE only)
  Download (PDF, 147 KB)

  NARSE registry protocol (DE only)
  Download (PDF, 542 KB)

• Information and Consent

  For patients: Information on participating in the National Registry for Rare Diseases (DE only)
  Download (PDF, 196 KB)

  For parents and guardians: Information on participating in the National Registry for Rare Diseases (DE only)
  Download (PDF, 202 KB)

  For adolescents: Information on participating in the National Registry for Rare Diseases (DE only)
  Download (PDF, 187 KB)