[The competence network for congenital heart defects. Networking instead of isolated efforts for optimized research and care].
Congenital heart defects (CHD) are the most common congenital malformation; there is no clearly defined clinical picture. Although, thanks to medical progress, most of those affected survive into adulthood, they remain chronically ill throughout their lives and require specific care. By enabling nationwide cooperation and interdisciplinary research, the Competence Network for Congenital Heart Defects can provide and optimize this care. Clinical studies concerning clinical manifestations and recent diagnostic and treatment options can make use of the collected data. Being the core project of the Network, the National Register for congenital heart defects (registered association) registers all patients with a CHD throughout Germany. This data provides a basis for epidemiologic studies concerning quality of life and psychosocial aspects. Thus, integral care and swift transfer of knowledge between science and practice can be achieved. Meanwhile, pediatric guidelines could be developed and raised to S2 level. Additionally, the Register's results allow an assessment of the present situation of cardiac malformations, which is to be further evaluated in current studies. Particular attention is paid to the prevalence of CHD and adult patients' needs. In the long term, the concept of integrated care, and especially the idea of multidisciplinarity, is to be realized within the scope of a "health care database". All in all, the Competence Network for Congenital Heart Defects plays a substantial part in detecting needs and deficits of the current care for patients with CHD and helps developing strategies for an adequate and efficient care, while guaranteeing a high degree of transparency for those concerned.
Bauer
Ulrike
U
Kompetenznetz Angeborene Herzfehler und Nationales Register für Angeborene Herzfehler E.v., Augustenburger Platz 1, 13353 Berlin. ahf@kompetenznetz-ahf.de
Niggemeyer
Eva
E
Lange
Peter E
PE
D000328:Adult; D002648:Child; D002986:Clinical Trials as Topic; D003299:Cooperative Behavior; D003430:Cross-Sectional Studies; D016208:Databases, Factual / Q000706:statistics & numerical data; D005858:Germany; D006330:Heart Defects, Congenital / Q000175:diagnosis / Q000453:epidemiology / Q000628:therapy*; D006801:Humans; D015337:Multicenter Studies as Topic; D010348:Patient Care Team; D017410:Practice Guidelines as Topic; D011379:Prognosis; D011785:Quality Assurance, Health Care; D011788:Quality of Life; D012042:Registries / Q000706:statistics & numerical data; D012106:Research