数据库名称：RaDaR
数据库简述：Rare Diseases Registry Program
所属国家/地区：United States
数据库主要信息：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.
建立年份：2015
联系信息：Contact information
University/Institution:
National Center for Advancing Translational Sciences
Address:
National Center for Advancing Translational Sciences (NCATS), National Institutes of Health
City:
Province/State:
Country/Region:
United States
Contact name (PI/Team):
Yaffa R. Rubinstein
Contact email (PI/Helpdesk):
eric.sid@nih.gov
