RaDaR

RaDaR, formerly known as the Global Rare Diseases Registry Data Repository (GRDR) program, aims to define best practices for patient registries. RaDaR also strives to identify and adopt standards to support high-quality registries for rare diseases therapeutics development. To achieve these aims, RaDaR staff will: Identify, develop and validate data standards, data collections and data sharing practices that can be used across the rare disease registry community; Develop best practices for building high-quality registries able to support therapeutics development; and Make these best practices and standards broadly available and easily accessible to the rare disease community.RaDaR 前身为全球罕见病登记数据资源库（Global Rare Diseases Registry Data Repository，简称 GRDR）项目，旨在明确罕见病患者登记注册的最佳实践。此外，RaDaR 还致力于确定并采用相关标准，以支撑面向罕见病治疗药物研发的高质量登记注册工作。为达成上述目标，RaDaR 团队将开展以下三项工作：其一，识别、开发并验证可在全球罕见病登记注册社群中通用的数据标准、数据采集规范与数据共享实践；其二，制定可支撑治疗药物研发的高质量登记注册体系构建最佳实践；其三，将这些最佳实践与标准向罕见病社群广泛推广，确保其便捷获取。