Contact details
Natasha Appelman-Dijkstra registries@lumc.nl
Main
Publications
Data source publications
- Data dictionaries
- The current landscape of European registries for rare endocrine conditions
- The EuRRECa Project as a Model for Data Access and Governance Policies for Rare Disease Registries That Collect Clinical Outcomes
- Supporting international networks through platforms for standardised data collection—the European Registries for Rare Endocrine Conditions (EuRRECa) model
- Electronic reporting of rare endocrine conditions within a clinical network: results from the EuRRECa project