Kurzfassung

The Directory of Rare Diseases Registries is part of the European RD Registry Infrastructure (ERDRI) and developed at the IMBEI -Medical Informatics. The project is funded by the Joint Research Centre of the European Commission.
As meta-registry, it provides an overview of existing registries with rare diseases in Europe. No single institution, and in many cases no single country, has sufficient numbers of patients with a rare disease to conduct generalizable clinical, epidemiological, or...The Directory of Rare Diseases Registries is part of the European RD Registry Infrastructure (ERDRI) and developed at the IMBEI -Medical Informatics. The project is funded by the Joint Research Centre of the European Commission.
As meta-registry, it provides an overview of existing registries with rare diseases in Europe. No single institution, and in many cases no single country, has sufficient numbers of patients with a rare disease to conduct generalizable clinical, epidemiological, or translational research. So this system will improve the scientific exchange and cooperation of registry owners to increase the quality of research projects with registry data.» weiterlesen» einklappen