Medizinische Universität Graz Austria/Österreich - Forschungsportal - Medical University of Graz
Gewählte Publikation:
SHR Neuro Krebs Kardio Lipid Stoffw Microb
Kodra, Y; Weinbach, J; Posada-de-la-Paz, M; Coi, A; Lemonnier, SL; van Enckevort, D; Roos, M; Jacobsen, A; Cornet, R; Ahmed, SF; Bros-Facer, V; Popa, V; Van Meel, M; Renault, D; von Gizycki, R; Santoro, M; Landais, P; Torreri, P; Carta, C; Mascalzoni, D; Gainotti, S; Lopez, E; Ambrosini, A; Müller, H; Reis, R; Bianchi, F; Rubinstein, YR; Lochmüller, H; Taruscio, D.
Recommendations for Improving the Quality of Rare Disease Registries.
Int J Environ Res Public Health. 2018; 15(8):
Doi: 10.3390/ijerph15081644
[OPEN ACCESS]
Web of Science
PubMed
FullText
FullText_MUG
- Co-Autor*innen der Med Uni Graz
- Müller Heimo
- Altmetrics:
- Dimensions Citations:
- Plum Analytics:
- Scite (citation analytics):
- Abstract:
- 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 healthcare management. They constitute a key information system that supports the activities of European Reference Networks (ERNs) on rare diseases. A rapid proliferation of RD registries has occurred during the last years and there is a need to develop guidance for the minimum requirements, recommendations and standards necessary to maintain a high-quality registry. In response to these heterogeneities, in the framework of RD-Connect, a European platform connecting databases, registries, biobanks and clinical bioinformatics for rare disease research, we report on a list of recommendations, developed by a group of experts, including members of patient organizations, to be used as a framework for improving the quality of RD registries. This list includes aspects of governance, Findable, Accessible, Interoperable and Reusable (FAIR) data and information, infrastructure, documentation, training, and quality audit. The list is intended to be used by established as well as new RD registries. Further work includes the development of a toolkit to enable continuous assessment and improvement of their organizational and data quality.
- Find related publications in this database (using NLM MeSH Indexing)
- Biomedical Research -
- Computational Biology -
- Data Accuracy -
- Data Accuracy -
- Humans -
- Information Storage and Retrieval - standards
- Quality Improvement -
- Rare Diseases -
- Registries - standards
- Find related publications in this database (Keywords)
- rare diseases
- patient registry
- quality