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.
journal_name
Int J Environ Res Public Healthauthors
Ali SR,Bryce J,Tan LE,Hiort O,Pereira AM,van den Akker ELT,Appelman-Dijkstra NM,Bertherat J,Cools M,Dekkers OM,Kodra Y,Persani L,Smyth A,Smythe C,Taruscio D,Ahmed SFdoi
10.3390/ijerph17238743subject
Has Abstractpub_date
2020-11-25 00:00:00issue
23eissn
1661-7827issn
1660-4601pii
ijerph17238743journal_volume
17pub_type
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