NRCHD

National register for congenital heart defects (NRCHD)

The register was founded in 2003 by the German Society of Paediatric Cardiology, the German Society of Cardiology and the German Society for Thoracic and Cardiovascular Surgery as a scientific registered organization. It is the core project of the Competence Network for Congenital Heart Defects.

The person-based register records data from patients of all age groups and with all kinds of congenital heart defects across Germany. Congenital heart defects are distinguished by a multitude of different clinical pictures and courses of disease. Thus they confront research with particular challenges. Accordingly, phenotype data are derived from medical reports and coded according to the International Paediatric and Concenital Cardiac Code (IPCCC). Data sets are uniquely linked to the respective patients, which facilitates the option of documenting medical histories over the course of time. This is essential for long-term studies.

The register’s data collection can be viewed as being representative. It represents the source for significant data on health care research. Furthermore, it provides the basis for qualified retrospective and prospective research projects. The standardized recording of data facilitates assembling cohorts even of rare congenital heart defects. Besides, the established infrastructure allows implementing further subregisters on diverse congenital diseases on short notice. Currently, studies are ongoing on subjects such as pulmonary arterial hypertension, Eisenmenger syndrome, Down syndrome, comorbidities in adult congenital heart disease (ACHD), causes of death in ACHD or outcome in truncus arteriosus. The study results are made available to the participants in lay terms via the web appearance of the register.

Since 2007, the register has been supplemented by a biorepository which facilitates the multicenter collection of DNA and tissue samples of rare congenital heart defects. Samples are stored and processed centrally by the Central and Interdisciplinary Biobank of the Charité (ZeBanC) on behalf of the register. The biorepository stands out by combining the collected samples with well characterized phenotype data. These data are available to interested scientists worldwide for future research.

Links: Initiate research projects within the scope of the Register (including biorepository)

Publications

Educational achievement of children with congenital heart disease: Promising results from a survey by the German National Register of Congenital Heart Defects. Pfitzer C et al. Early human development 128, 27-34, (2019).

Cardiac resynchronization therapy in congenital heart disease: Results from the German National Register for Congenital Heart Defects. Flügge AK et al. International journal of cardiology 273, 108-111, (2018).

More publications here

Principal Investigators

Ulrike Bauer, Thomas Pickardt (Berlin)