IMPACT Registry: Improving Pediatric and Adult Congenital Treatment

  • Dr Kathy Jenkins, Children's Hospital of Boston, United States
  • Dr Jonathan Rome, Children's Hospital of Philadelphia, United States
  • Cardiac catheterization for congenital heart disease (CHD) has transitioned from a predominantly diagnostic procedure to therapy that may be performed by itself or in combination with surgery. Guidelines have been published providing recommendations for the appropriate use of diagnostic catheterization, interventional catheterization, and surgical treatments. However, because studies performed in CHD are generally small in number and because prior registries of CHD have been limited in scope, there is a paucity of evidence-based data relating to diagnostic catheterization and catheter-based interventions, and to the morbidity and mortality associated with these procedures. The IMPACT registry will be a multi-center registry collecting data on all diagnostic and interventional cardiac catheterizations in pediatric laboratories as well as in adult laboratories treating congenital heart disease. Data variables will be chosen to allow for measurement of variability in procedures. Variability will be linked to outcome measures, allowing a more meaningful measurement of performance and benchmarking. Performance improvement tools will be implemented and better outcomes will be pursued. The Registry will initially be based upon discharge data but will transition to a longitudinal database. Data variables will be collected to allow comparison with the STS surgical database. A working group has been assembled to outline the necessary demographics, nomenclature, procedure and complication lists and outcome measurements for diagnostic catheterizations, ASD closure, PDA closure, pulmonary valve stenosis, aortic valve stenosis, coarctation of the aorta, and pulmonary artery stenting. The registry will undergo pilot testing in 2009 and then be released to CHD centers in 2010.