Registries and databases: A European perspective

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Registries and databases : A European perspective. / Ljung, Rolf C R.

In: Haemophilia, Vol. 26 , No. Suppl 3, 04.2020, p. 26-28.

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Ljung, Rolf C R. / Registries and databases : A European perspective. In: Haemophilia. 2020 ; Vol. 26 , No. Suppl 3. pp. 26-28.

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TY - JOUR

T1 - Registries and databases

T2 - A European perspective

AU - Ljung, Rolf C R

PY - 2020/4

Y1 - 2020/4

N2 - 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.

AB - 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.

U2 - 10.1111/hae.13920

DO - 10.1111/hae.13920

M3 - Article

VL - 26

SP - 26

EP - 28

JO - Haemophilia

JF - Haemophilia

SN - 1351-8216

IS - Suppl 3

ER -