EBE and EuropaBio’s position paper on Registries and Databases for Orphan Medicinal Products
BACKGROUND AND PURPOSE OF THE POSITION PAPER
Registries are well-established & commonly-used methods for tracking and reporting clinical outcome, safety, effectiveness and epidemiological endpoints for rare disease patients and treatments. The health information from such databases assists families affected by rare diseases, patient organisations, healthcare professionals, scientists, national and European authorities / regulators, the pharmaceutical industry and payers; to make informed decisions at all stages of research, development and delivery of treatment.
Read the position paper here