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

ABSTRACT:

Introduction

Linking healthcare data sets can create valuable resources for research, particularly when investigating rare exposures or outcomes. However, across Europe, the permissions processes required to access data can be complex. This paper documents the processes required by the EUROlinkCAT study investigators to research the health and survival of children with congenital anomalies in Europe.

Methods

Eighteen congenital anomaly registries in 14 countries provided information on all the permissions required to perform surveillance of congenital anomalies and to link their data on live births with available vital statistics and healthcare databases for research. Small number restrictions imposed by data providers were also documented.

Results

The permissions req

SUBMITTER: Claridge H 

PROVIDER: S-EPMC10387628 | biostudies-literature | 2023 Jul

REPOSITORIES: biostudies-literature