Information for Researchers

“Registries for Rare Diseases: Involve the Patient” Originally published on Medscape Rare Diseases as part of the NORD and Medscape Editorial Collaboration.


The APBDRF FAN/NHS Registry collects disease-specific natural history data about individuals with rare disorders, with the goal of improving the understanding of rare disorders and informing treatment development. Registry questionnaires were built from common data element standards and cover the following topics: