The Swiss Registry for Heart Diseases in Children Living in Switzerland. SPHC
Condition: Heart Disease Congenital
MeSH terms: Heart Diseases
Study type: Observational [Patient Registry]

Summary: 
      The Swiss Pediatric Heart Cohort aims to collect representative longitudinal data on all
      children diagnosed with a clinically relevant heart disease in Switzerland. The long-term
      goal is to optimize diagnosis and therapy, and to allow setting up national research
      projects.
    

Detailed description: 
      In the entire spectrum of childhood diseases, heart disease occupy a special position
      regarding incidence; Congenital heart defects are among the most common organ abnormalities,
      moderate and severe forms of congenital heart diseases occur with a frequency of about 6 to 8
      per 1000 live births. Rapid advances in diagnostic and therapeutic options in recent decades
      have led to a spectacular improvement in prognosis.

      So far, data from heart diseases in children in Switzerland are not recorded centrally. A
      national registry collecting all relevant personal and medical data, as in other European
      countries, e.g. Finland, Sweden or Germany does not exist. The incidence and course of heart
      diseases in children in Switzerland are therefore unknown and can only be extrapolated
      indirectly from other countries. The SPHC project was therefore initiated by the Swiss
      pediatric cardiologists and is supported by its professional association, the Swiss Society
      for Pediatric Cardiology (Schweizerische Gesellschaft für pädiatrische Kardiologie; SGPK), as
      well as by its research association, the Association for Pediatric Heart Research Switzerland
      (Verein Kinderherzforschung Schweiz; VKHFS).

      The aim of medical efforts in children with heart disease has shifted in recent years from a
      mere assurance of survival to an overall optimization of morbidity. These patients are
      expected to have a good perspective with normal growth, development, and quality of life well
      into adulthood. This goal can be achieved by researching the incidence and disease
      progression as well as the diagnostic and therapeutic measures in Switzerland. In this way,
      conclusions can be drawn, which lead to a modification of the therapeutic procedures and
      finally improve the prognosis of heart disease. The statistical significance of individual
      case descriptions or retrospective case series of individual centers, as practiced today, is
      insufficient for these purposes.

      The aim of the SPHC is to optimize the diagnosis and therapy of all children with heart
      disease in Switzerland. In particular, the following goals are pursued:

        -  Describe incidence of heart diseases in childhood

        -  Enable research on the cause of the disease

        -  Record long-term history of mortality, morbidity and quality of life

        -  Describe therapeutic measures (medications, cardiac catheterization, cardiac surgery)
           regarding efficacy and safety

        -  Identify risk factors for a good / bad prognosis

        -  Promote prevention

        -  Collect basic data for the planning of care and for health economic analyses in the
           context of public health research projects

        -  Provide data for international collaborative studies

        -  A collaboration with Registry of adults with congenital heart defects (Grown Up
           Congenital Heart Disease, GUCH) is anticipated. This registry also uses SecuTrial® and
           is also located in the Clinical Trial Centre (CTC) of the University Zürich.
    

Observational model: Cohort
Time perspective: Prospective
Sampling method: Non-Probability Sample
Study population: 
        The population from newborns to adolescents with newly diagnosed heart disease is recorded.
      
Keywords: congenital heart disease; pediatric; registry; heart disease