reference guide for registry management

New edition of the reference guide for registry implementation and management
 
In response to the increasing use of registries for research on rare diseases, the US Agency for 

Healthcare Research and Quality published its third edition of

“Registries for Evaluating Patient Outcomes: A User’s Guide” in April 2014. The guide offers best practice standards for the design and implementation of registries and the analysis and interpretation of data. This document should be the Vade-Mecum of registry managers in the field of rare diseases.