Ethics and legal requirements for data linkage in 14 European countries for children with congenital anomalies

Article Medicine, General & Internal

The road to hell is paved with good intentions: the experience of applying for national data for linkage and suggestions for improvement

Julie A. Taylor et al.

Summary: Linking data sets from clinical and national audits, national registries, and other NHS encounter data can improve healthcare services, but the process of obtaining linked national data sets is challenging. The study for LAUNCHES QI faced challenges such as large amounts of information required, lack of clarity on processes, and resource constraints, leading to an extended timeframe of 2.5 years for data acquisition. Streamlining the application process for accessing data and providing clarity to data controllers could facilitate governance and accelerate scientific studies and healthcare improvements.

BMJ OPEN (2021)

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Article Medicine, General & Internal

Health data linkage research in Australia remains challenging

Dharmenaan Palamuthusingam et al.

INTERNAL MEDICINE JOURNAL (2019)

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Article Cardiac & Cardiovascular Systems

Surgical Management and Outcomes of Ebstein Anomaly in Neonates and Infants: A Society of Thoracic Surgeons Congenital Heart Surgery Database Analysis

Kimberly A. Holst et al.

ANNALS OF THORACIC SURGERY (2018)

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Article Cardiac & Cardiovascular Systems

The changing epidemiology of Ebstein's anomaly and its relationship with maternal mental health conditions: a European registry-based study

Breidge Boyle et al.

CARDIOLOGY IN THE YOUNG (2017)

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Article Health Care Sciences & Services

Health Services Research and Data Linkages: Issues, Methods, and Directions for the Future

Cathy J. Bradley et al.

HEALTH SERVICES RESEARCH (2010)

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Article Cardiac & Cardiovascular Systems

Improving outcomes in fetuses and neonates with congenital displacement (Ebstein's malformation) or dysplasia of the tricuspid valve

DB McElhinney et al.

AMERICAN JOURNAL OF CARDIOLOGY (2005)

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Ethics and legal requirements for data linkage in 14 European countries for children with congenital anomalies

Related references

The road to hell is paved with good intentions: the experience of applying for national data for linkage and suggestions for improvement

Health data linkage research in Australia remains challenging

Surgical Management and Outcomes of Ebstein Anomaly in Neonates and Infants: A Society of Thoracic Surgeons Congenital Heart Surgery Database Analysis

The changing epidemiology of Ebstein's anomaly and its relationship with maternal mental health conditions: a European registry-based study

Health Services Research and Data Linkages: Issues, Methods, and Directions for the Future

Improving outcomes in fetuses and neonates with congenital displacement (Ebstein's malformation) or dysplasia of the tricuspid valve

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