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Registries and databases—A European perspective.
- Source :
- Haemophilia; Apr2020 Supplement S3, Vol. 26, p26-28, 3p
- Publication Year :
- 2020
-
Abstract
- Registries will enable cohort studies to be performed, which are usually considered to be the best quality of observational studies. The quality of data of registries can be increased if is it possible to merge results ('crosstalk') between registries. A prerequisite for that is an agreed uniform core set of data to be collected and uniform definitions on the items to be collected. This paper discusses problems and barriers with existing registries and provides recommendations from an EMA workshop (European Medicines Agency), for core common data sets and how to secure the quality of data collected. The PedNet registry including >2200 children with haemophilia is presented as an example of a registry/cohort study. [ABSTRACT FROM AUTHOR]
- Subjects :
- HEMOPHILIA
DATABASES
DATA quality
DEFINITIONS
COHORT analysis
Subjects
Details
- Language :
- English
- ISSN :
- 13518216
- Volume :
- 26
- Database :
- Complementary Index
- Journal :
- Haemophilia
- Publication Type :
- Academic Journal
- Accession number :
- 142998687
- Full Text :
- https://doi.org/10.1111/hae.13920