Pilot programme launched to establish Global Rare Diseases Patient Registry and Data Repository
In the USA, the Office of Rare Diseases Research (ORDR) of the National Institutes of Health, in collaboration with Patient Crossroads, Children Hospital of Philadelphia, and WebMD, has launched a two-year pilot programme to establish a Global Rare Diseases Patient Registry and Data Repository (GRDR) that will gather anonymised patient clinical information that can serve many different strands of the rare disease and orphan drug community – including research, clinical care, epidemiology, advocacy, and information. The GRDR “… will establish a common data repository for studying rare diseases by aggregating patient information from multiple registries based on a library of common data elements. By including any participating registry, the repository enables cross-disorder analysis which may result in non-obvious research correlations as well as providing a larger patient population for recruiting into trials”.
