[Competence Network for Congenital Heart Defects: innovative research for a young patient group]

Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2016 Apr;59(4):497-505. doi: 10.1007/s00103-016-2321-z.
[Article in German]

Abstract

Background: Congenital heart disease is the most frequent congenital malformation in humans and affects almost 1 % of all newborns. Thanks to advances in diagnostics and treatment, over 90 % of those affected reach adulthood today. Patient numbers are therefore growing constantly. The majority of those affected, however, remain chronically ill throughout life and require continuous specialized care. The spectrum of different clinical pictures is vast. Since this is a relatively young patient group, both research and care are lacking relevant knowledge and experience.

Objective: The Competence Network for Congenital Heart Defects (CNCHD) was founded in 2003 to tackle the challenge of heterogeneity and accordingly small sample sizes by means of networked research. The following article offers an overview of the network and its mode of operation.

Material and methods: The Germany-wide research network involves all relevant levels of research, public health care, the patient community and the general public. On the basis of a complex and flexible database infrastructure, it facilitates multicenter and interdisciplinary research in the field of congenital heart disease.

Results and discussion: The CNCHD succeeded in establishing research on congenital heart disease throughout Germany by providing a powerful research network and a suitable infrastructure. Scientists from across Germany and all over the world use this basis to jointly find answers to burning questions in the field of congenital heart disease.

Keywords: Congenital heart disease; Database infrastructure; Interdisciplinary; Multicenter; Research network.

MeSH terms

  • Biomedical Research / organization & administration*
  • Clinical Competence*
  • Clinical Trials as Topic / organization & administration*
  • Germany / epidemiology
  • Government Programs / organization & administration*
  • Heart Defects, Congenital / diagnosis*
  • Heart Defects, Congenital / epidemiology
  • Heart Defects, Congenital / therapy*
  • Humans
  • Interinstitutional Relations
  • Models, Organizational
  • Program Evaluation
  • Quality Assurance, Health Care / organization & administration