Ethics and legal requirements for data linkage in 14 European countries for children with congenital anomalies.
Hugh ClaridgeJoachim TanMaria A LoaneEster GarneIngeborg BarisicClara Cavero-CarbonellCarlos Matias DiasMiriam GattSusan JordanBabak KhoshnoodSonja Kiuru-KuhlefeltKari KlungsoyrOlatz Mokoroa CarolloVera NelenAmanda J NevilleAnna PieriniHanitra RandrianaivoAnke RissmannDavid TuckerHermien de WalleWladimir WerteleckiJoan K MorrisPublished in: BMJ open (2023)
The permissions required to obtain and link data on children with congenital anomalies varied greatly across Europe. The variation and complexity present a significant obstacle to the use of such data, especially in large data linkage projects. Furthermore, small number restrictions severely limited the research that could be performed for children with specific rare congenital anomalies.