Background and objective

The German Society for Paediatric Cardiology (DGPK) and the German Society for Thoracic and Cardiovascular Surgery (DGTHG) set up the interdisciplinary project group entitled National Quality Assurance of Congenital Heart Defects in 2006. The aim was to organise a national survey on the therapeutic activities conducted in paediatric cardiology and paediatric heart surgery in order to furnish a previously non-existing overview of the quantity and quality of medical care in the field of congenital heart defects in Germany.

After establishing the objectives, the project group defined a structured data set (based on the European Association for Cardio-Thoracic Surgery’s existing data collection). A particular concern in carrying out the survey was the pseudonymisation of patients in order to comply with all the relevant data protection laws in Germany. In cooperation with the Competence Network for Congenital Heart Defects in Berlin, a web-based database was programmed in strict compliance with statutory data protection regulations which permits data to be entered online.

In parallel with the expert associations’ activities, Germany’s Federal Joint Committee brought the “Regulation on the Assurance and Promotion of Quality in the Medical Care of Patients With Congenital Heart Disease or Heart Disease Acquired During Childhood Based on Section 137 (1) No. 2 of the German Social Code V” (Children’s Heart Surgery Regulation) into force after in-depth deliberation on 18 February 2010.