Informed consent process for patient participation in rare disease registries linked to biorepositories

摘要

As plans are moving ahead to establish the Global Rare Disease Patient Registry and Data Repository (GRDR), "contributing registries are in need of guidance on the informed consent process for patients whose information will be included in a registry. One of the GRDR goals is to aggregate de-identified patient medical information linked to their biospecimens, using voluntary patient identifiers. The aim of the GRDR is to provide a resource for research that will improve the quality of life of those with rare diseases, develop therapeutic interventions and, ultimately, find cures.