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Knowledge4Policy
Knowledge for policy

Supporting policy with scientific evidence

We mobilise people and resources to create, curate, make sense of and use knowledge to inform policymaking across Europe.

  • Publication | 2024

Framework for Multistakeholder Patient Registries in the Field of Rare Diseases. Focus on Neurogenetic Diseases (Neurology)

Cancer

Framework for Multistakeholder Patient Registries in the Field of Rare Diseases

Focus on Neurogenetic Diseases

This article proposes a framework to guide stakeholders in establishing or improving rare disease registries that fulfil requirements of academics and patients as well as regulators, HTA bodies, and commercial parties.

 

Article in Neurology