Data privacy management and data quality monitoring in the German Centre for Cardiovascular Research's multicentre TranslatiOnal Registry for CardiomyopatHies (DZHK-TORCH).
ESC Heart Fail
; 4(4): 440-447, 2017 11.
Article
em En
| MEDLINE
| ID: mdl-28742243
ABSTRACT
AIMS:
The multicentric TranslatiOnal Registry for CardiomyopatHies (TORCH) of the German Centre for Cardiovascular Research aims to recruit 2300 patients with non-ischemic cardiomyopthies. METHODS ANDRESULTS:
The investigations were performed after standard operating procedures. The data are collected in standardized electronic case report forms provided by the data holding of the central data management of the German Centre for Cardiovascular Research using secuTrial (interActive Systems GmbH, Berlin, Germany). The personal-identifying data and informed consent are collected, stored, and quality-checked by the independent Trusted Third Party in Greifswald. The quality management of the medical data is performed by the data and quality centre Greifswald. In December 2014, the recruitment for TORCH has started. Currently, data and biomaterial from about 1397 patients and more than 74 500 biomaterial aliquots were collected. Regular study centre-specific quality reports address completeness and plausibility of data and provide detailed information about current missing or implausible data entries to improve the data quality by using a query management in addition.CONCLUSIONS:
A regular quality control and reporting improve the data quality in TORCH and will support high-quality data analysis and the translation of research results into routine care.Palavras-chave
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Assunto principal:
Sistema de Registros
/
Privacidade
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Pesquisa Translacional Biomédica
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Gestão do Conhecimento
/
Confiabilidade dos Dados
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Consentimento Livre e Esclarecido
/
Cardiomiopatias
Tipo de estudo:
Clinical_trials
/
Prognostic_studies
Limite:
Female
/
Humans
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Male
/
Middle aged
País/Região como assunto:
Europa
Idioma:
En
Revista:
ESC Heart Fail
Ano de publicação:
2017
Tipo de documento:
Article
País de afiliação:
Alemanha