About the Core Registry

 

The EuRRECa Core Registry collects a very small amount of information in a registry for a wide range of rare conditions including those that are covered within the European Networks of Health Care Providers for rare endocrine and rare bone conditions Endo‐ERN and ERN-BOND.  The data collected in the Registry will be used to improve clinical care as well as research.  The registry can advise patients on suitable studies they can participate in and other registries. Patients that have been added to the regsitry and have given consent to access their own record can view their data and change their consent options.  Read more about this here Providing Access to Patients