2 April 2016

National Quality Registry for Congenital Heart Disease (SWEDCON)

  • Registry Manager: Region Skåne
  • Registry Centre - affiliation: Uppsala Clinical Research Center (UCR)
  • Start year: 2009
  • Classifications used: KVÅ, ICD10, EPCC
  • This registry contains data on: Diagnoses, Interventions, Inpatient Care, Specialised Outpatient Care, PROM or other patient-reported health effects, Follow-up Data 12 months or later after the case is registered in the registry

Description of registry

SWEDCON, the National Quality Registry for Congenital Heart Disease, is an amalgamation of the former GUCH registry for adults with congenital heart defects, local paediatric cardiology registries and the amalgamation of the former GUCH registry for adults with congenital heart defects and local paediatric cardiology registries. A paediatric heart surgery portion and a foetal portion are also included. The registry has the aim of monitoring patients with congenital heart disease from before birth through their entire lives. It also includes information on performed surgeries and catheter interventions.

Population

The registry aims to include all children with congenital heart disease in the country and the adult patients with congenital heart disease who visited any of the country’s GUCH (Grown-up Congenital Heart Disease) clinics. The foetal portion of the registry is still under construction.

Ages in the registry

All ages.

Total volume of registry

At the end of 2014, there were a total of 44,890 patients in the registry, of which 24,765 are aged 0-18.

Volume over the past operating year

In 2014, new registrations totalled 2901 children and 918 adults.

Coverage rate

Calculated as the percentage of registered units out of total possible: Children 90 percent, GUCH 84 percent, Surgery 100 percent.

Note: Variable lists are updated on a regular basis and should therefore be seen as preliminary. For the latest version, please contact the registry.

Category: Circulatory system

Certification level: 2

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