Collaboration Details

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Title of Collaborative Activity:

Rare Diseases Registry Program (RaDaR)

Description of Collaborative Activity:

NCATS launched the Rare Diseases Registry Program (RaDaR) website to provide the rare diseases community with easily accessible guidance on how to set up and maintain high-quality registries that are based on best practices and data standards. The goal is to enable rare diseases patient organizations to better promote and support patient-focused research and the collection of patient data that can be used in developing treatments for rare diseases.

Type of Collaborative Activity:

Research Initiative

Year the Collaborative Activity Originated:

NIH Participating Institutes/Centers/Office of the Director:

NCATS

HHS Agency Collaborators on this Activity:

FDA