The EuRRECa Project as a Model for Data Access and Governance Policies for Rare Disease Registries That Collect Clinical Outcomes

Abstract

Rare disease (RD) registries are important platforms that facilitate communication between health care professionals, patients and other members of the multidisciplinary team. RD registries enable data sharing and promotion of research and audits, often in an international setting, with the overall aim of improving patient care. RD registries also have a fundamental role in supporting the work of clinical networks such as the European Reference Networks (ERNs) for rare diseases. With the recent expansion of RD registries, it has become even more essential to outline standards of good practice in relation to governance, infrastructure, documentation, training, audits and adopting the Findable, Accessible, Interoperable and Reusable (FAIR) data principles to maintain registries of high quality. For the purpose of this paper, we highlight vital aspects of data access and data governance policies for RD registries, using the European Registries for Rare Endocrine Conditions (EuRRECa) as an example of a project that aims to promote good standards of practice for improving the quality of utilization of RD registries.

Overview publication

ЗаглавиеThe EuRRECa Project as a Model for Data Access and Governance Policies for Rare Disease Registries That Collect Clinical Outcomes
Датаноември 25th, 2020
Име на изданиеInternational Journal of Environmental Research and Public Health
Номер на издаванеVolume 17 / Issue 23 / 10.3390/ijerph17238743
АвториSalma R Ali, Jillian Bryce, Li En Tan, Olaf Hiort, Alberto M Pereira, Erica L T van den Akker, Natasha M Appelman-Dijkstra, Jerome Bertherat, Martine Cools, Olaf M Dekkers, Yllka Kodra, Luca Persani, Arlene Smyth, Christopher Smythe & Domenica Taruscio and S Faisal Ahmed
WPsWP2
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