CONCOR, an initiative towards a national registry and DNA-bank of patients with congenital heart disease in the Netherlands: Rationale, design, and first results | Zendy

Enno T. van der Velde | Zendy; Joris W.J. Vriend | Zendy; Marcel M.A.M. Mannens | Zendy; Cuno S.P.M. Uiterwaal | Zendy; Ronald Brand | Zendy; Barbara J.M. Mulder | Zendy

Open Access

CONCOR, an initiative towards a national registry and DNA-bank of patients with congenital heart disease in the Netherlands: Rationale, design, and first results

Author(s) -

Enno T. van der Velde,

Joris W.J. Vriend,

Marcel M.A.M. Mannens,

Cuno S.P.M. Uiterwaal,

Ronald Brand,

Barbara J.M. Mulder

Publication year - 2005

Publication title -

european journal of epidemiology

Language(s) - English

Resource type - Journals

SCImago Journal Rank - 3.825

H-Index - 111

eISSN - 1573-7284

pISSN - 0393-2990

DOI - 10.1007/s10654-005-4264-9

Subject(s) - medicine , epidemiology , public health , heart disease , family medicine , disease , pediatrics , pathology

Survival of patients with congenital heart disease has dramatically improved after surgical repair became available 40 years ago. Instead of a mortality of 85% during childhood following the natural course, over 85% of these infants are now expected to reach adulthood. However, data on long-term outcome is scarce due to the lack of large, national registries. Moreover, little is known about the genetic basis of congenital heart defects. In 2000, the Interuniversity Cardiology Institute of the Netherlands and the Netherlands Heart Foundation have taken the initiative to develop a national registry and DNA-bank of patients with congenital heart disease in the Netherlands named CONCOR.

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