The eurreca project as a model for data access and governance policies for rare disease registries that collect clinical outcomes

Salma 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, Arelene Smyth, Christopher Smythe, Domenica Taruscio, S. Faisal Ahmed

Research output: Contribution to journalReview articlepeer-review

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.

Original languageEnglish
Article number8743
Pages (from-to)1-12
Number of pages12
JournalInternational Journal of Environmental Research and Public Health
Volume17
Issue number23
DOIs
Publication statusPublished - Dec 1 2020

Keywords

  • Databases
  • Endocrinology
  • European reference networks
  • Rare conditions
  • Rare diseases
  • Registries

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health
  • Health, Toxicology and Mutagenesis

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