by sabine | Apr 1, 2020 | Publication
An overview of clinical activities in Endo-ERN: the need for alignment of future network criteria Objective Given that volumes of patients and interventions are important criteria to qualify as a reference centre (RC) for the European Reference Network on Rare...by sabine | Mar 1, 2020 | Publication
The EuRRECa Project as a Model for Data Access and Governance Policies for Rare Disease Registries That Collect Clinical Outcomes Rare disease (RD) registries are important platforms that facilitate communication between health care professionals, patients and other...by sabine | Apr 1, 2019 | Publication
The current landscape of European registries for rare endocrine conditions Objective To identify cross-border international registries for rare endocrine conditions that are led from Europe and to understand the extent of engagement with these registries within a...by sabine | Apr 1, 2018 | Publication
Recommendations for Improving the Quality of Rare Disease Registries Rare diseases (RD) patient registries are powerful instruments that help develop clinical research, facilitate the planning of appropriate clinical trials, improve patient care, and support...