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Implantation of Total Artificial Heart in Congenital Heart Disease
07:27

Implantation of Total Artificial Heart in Congenital Heart Disease

Published on: July 18, 2014

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

Eva Niggemeyer1

  • 1Kompetenznetz Angeborene Herzfehler e. V., Augustenburger Platz 1, 13353, Berlin, Deutschland. niggemeyer@kompetenznetz-ahf.de.

Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz
|March 11, 2016
PubMed

Insights

The Competence Network for Congenital Heart Defects (CNCHD) network was established to improve research for congenital heart defects. This networked approach facilitates multicenter studies and advances understanding of these complex conditions.

Area of Science:

  • Cardiology
  • Genetics
  • Public Health

Background:

  • Congenital heart disease (CHD) affects nearly 1% of newborns, with increasing adult survival rates necessitating lifelong specialized care.
  • The growing population of adults with CHD highlights gaps in knowledge and experience for this relatively young patient group.
  • The diverse clinical presentations of CHD pose challenges for research due to small, heterogeneous patient cohorts.

Purpose of the Study:

  • To address the challenges of heterogeneity and small sample sizes in congenital heart defect research.
  • To provide an overview of the Competence Network for Congenital Heart Defects (CNCHD) and its operational framework.
  • To foster collaborative research efforts across Germany for congenital heart defects.

Main Methods:

  • Establishment of the Competence Network for Congenital Heart Defects (CNCHD) in 2003.
  • Implementation of a Germany-wide research network involving researchers, healthcare providers, patients, and the public.
  • Development of a complex and flexible database infrastructure to support multicenter and interdisciplinary research.

Main Results:

  • The CNCHD successfully established a robust research network and infrastructure for congenital heart disease research nationwide.
  • The network facilitates multicenter and interdisciplinary research, enabling collaboration among scientists.
  • This infrastructure serves as a foundation for scientists globally to address critical questions in CHD.

Conclusions:

  • The CNCHD has significantly advanced congenital heart disease research in Germany through networked collaboration and a shared research infrastructure.
  • The network provides a vital platform for national and international scientists to investigate complex CHD questions.
  • Continued research through the CNCHD is essential for improving the care and understanding of individuals with congenital heart defects.
Abstract

Keywords:
Congenital heart diseaseDatabase infrastructureInterdisciplinaryMulticenterResearch network

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