Welcome to this learning activity titled An Impact Registry Overview. After participating in this learning activity, the learner will be able to describe the purpose of the impact registry, state the significance of congenital heart disease, and define follow-up criteria for the impact registry. The purpose of the impact registry is primarily to improve patient care by promoting quality improvement at participating institutions. The registry will seek to assess the prevalence, demographics, management, and outcomes of patients undergoing diagnostic catheterization and catheter-based interventions for congenital heart disease. The collection and analysis of nationwide data allows for significant contributions to the knowledge and outcomes associated with congenital heart disease. The data collected facilitates performance measurement, benchmarking, and quality improvement for hospitals caring for patients with congenital heart disease. Congenital heart disease is the most common birth defect. Estimates of pediatric congenital heart disease prevalence varies from 4 to 50 per 1,000 live births. CHD is present from the time of birth and occurs as a result of abnormal formations of the heart or major blood vessels. CHD also occurs in adults. Recent epidemiological data have shown that the population of patients living with this disease is growing rapidly. It is now estimated that there are more adults than children in the United States with CHD. The number of adult CHD hospitalizations increased from 36 to 73,000 over the period from 1998 to 2005. Improvements in medicine, such as two-dimensional and color-flow echocardiography, followed by novel surgical procedures, catheter-based interventions, and intensive care treatment over the last 30 years, have resulted in an increasing number of pediatric CHD patients surviving into adulthood. It is estimated that 50% of pediatric patients diagnosed with CHD undergo corrective treatment in their first year of life. Results of surgical procedures are tracked in registries and have shown valuable trends in delivery of care. There are no such catheterization registries and, as a result, there has been inadequate monitoring of outcomes and procedural variability in the application of catheter-based interventions to the population as a whole. A catheterization registry to assess the quality and effectiveness of these procedures is needed. Current published clinical practice guidelines have outlined recommendations for the care and management of CHD patients. For catheter-based interventional procedures and or surgical treatments, however, most recommendations have been derived primarily from expert opinion, thereby underscoring the need to systematically collect data on these populations to gain greater evidence-based insights. In addition, because clinical studies conducted in congenital heart disease have generally been small in number, coupled with the fact that prior registries have been limited in scope and in geographic representation, there is a paucity of evidence-based information related to the use of diagnostic catheterization and catheter-based interventions, as well as the acute and long-term morbidity and mortality associated with these procedures. Along these same lines, there is an ongoing need to facilitate quality improvement in this area. Moreover, the use of off-label devices in this population has become standard of care, calling into question the safety and effectiveness of their use. The implementation of a National Congenital Heart Disease Registry allows for significant contributions to the knowledge and outcomes associated with this disease and further enhances the quality of care received by CHD patients. The inclusion patient population for the IMPACT Registry includes all pediatric patients less than 18 years of age and all adult patients greater than or equal to 18 years of age with a congenital heart defect. Procedures that are included in the IMPACT Registry include diagnostic catheterization, atrial septal defect or ASD closure, coarctation repair, aortic valvuloplasty, pulmonary valvuloplasty, patent ductus arteriosus or PDA closure, proximal pulmonary artery stenting, electrophysiology catheterization or electrophysiology ablation, transcatheter pulmonary valve replacement or TPVR. Transcatheter aortic valve replacement, TAVR, is not captured in the IMPACT Registry. There is an option to capture follow-up for the IMPACT Registry population. Follow-up is not mandated and is captured at a one-year post-procedure. Follow-up is for IMPACT patients with electrophysiology procedures. Outcomes reported at one year include follow-up status, readmission, symptom severity, and late catheter ablation outcomes. As a nationally recognized surveillance tool, the IMPACT Registry is well positioned within the healthcare industry. It provides participants weekly access to their data and metric performance through an interactive dashboard and quarterly benchmark feedback through the Executive Summary Measures and Metrics Report. These data support ongoing quality improvement efforts by hospitals performing this life-saving intervention. The IMPACT Registry has also become a tool for outside stakeholders, healthcare systems, patients and payers who use it to assess the incidence and trends of procedures, the quality of care provided by providers, and the centers engaged in performing these procedures. It supports numerous research initiatives, informs clinical practice, and guideline development. The IMPACT Registry is governed by a 7-10 member steering committee with a chair, representative from the Pediatric and Congenital Electrophysiology Society, and ex-officio members from the IMPACT Registry Research and Publications Subcommittee as well as NCDR Oversight Committee. Committee members have expertise in clinical practice, financial management, quality measurement, and improvement and or health system strategy and innovation. The steering committee provides strategic oversight and direction of the registry, guidance for program activities, and helps identify and prioritize research initiatives. Committee recommendations are provided to the NCDR Oversight Committee, thus helping to inform and influence the direction of the NCDR. Thank you for participating in this learning activity titled An IMPACT Registry Overview. Now that you've completed this learning activity, the learner will be able to describe the purpose of the IMPACT Registry, state the significance of congenital heart disease, define follow-up criteria for the IMPACT Registry.

IMPACT Registry

patient care

quality improvement

congenital heart disease

data collection

diagnostic catheterization

catheter-based interventions