Documents

Registration checklist (DE only)

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For parents and guardians: Information on participating in the National Registry for Rare Diseases (DE only)

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For adolescents: Information on participating in the National Registry for Rare Diseases (DE only)

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For patients: Information on participating in the National Registry for Rare Diseases (DE only)

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NARSE flyer

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NARSE data protection policy with data protection impact assessment (DE only)

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NARSE dataset (DE only)

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NARSE terms of use (DE only)

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NARSE registry protocol (DE only)

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NARSE user guide (DE only)

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NARSE ethics vote at Charité (DE only)

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NARSE ethics application Charité (DE only)

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NARSE reporting agency agreement (DE only)

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NARSE list of registrants (appendix to the reporting agency agreement) (DE only)

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NARSE TMF data protection vote (DE only)

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NARSE form (DE only)

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