[Cross-Project Support of Registries in Development, Implementation and Operation]. / Projektübergreifende Unterstützung von Registern in Entwicklung, Umsetzung und Betrieb.
Gesundheitswesen
; 83(S 01): S54-S59, 2021 Nov.
Article
em De
| MEDLINE
| ID: mdl-34731894
ABSTRACT
OBJECTIVE:
The German Federal Ministry of Education and Research funded a project accompanying a funding initiative for registries in health services research. The aim was to provide cross-registry support initially for 16 and later 6 projects with regard to methodological, technical and structural standards.METHODS:
The 16 projects were initially guided in concept development, e. g., providing a template for a registry protocol. Furthermore, an expert consultation was organized and carried out. To assist in the selection of an IT solution, a challenge workshop was hosted where different vendors presented their software for registries. The catalogs of data elements of the projects were migrated into a metadata catalog and transferred to the standard model of ISO/IEC 11179. A set of quality indicators was defined for a cross-registry quality management approach to be implemented during the operational phase. To improve data quality, the indicators were to be transmitted and evaluated on a regular basis.RESULTS:
The template for a registry protocol was used by the majority of projects when applying for funding of their operational phase. At the workshop on IT solutions, 12 products for registry software were presented; however, the projects opted for other solutions for different reasons. Transferring the catalogs of data elements into a standard model enabled a comparison of attributes and value sets, which in turn enabled formulation of recommendations for important elements. A set of five quality indicators was defined for quality management, for which an initial evaluation was carried out for 2020.CONCLUSION:
The template of a registry protocol serves a systematic development of a concept. The use of a uniformly structured catalog of data elements supports compliance with the FAIR principles. Monitoring of data quality can be achieved by regularly identifying quality indicators across registries.
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Assunto principal:
Confiabilidade dos Dados
/
Metadados
País/Região como assunto:
Europa
Idioma:
De
Revista:
Gesundheitswesen
Assunto da revista:
SAUDE PUBLICA
Ano de publicação:
2021
Tipo de documento:
Article