title: Development of the MAGIC congenital heart disease catheterization database for interventional outcome studies.
abstract: As the field of catheter-based therapies for congenital heart disease continues to expand, we lack the evidence-based data to make appropriate therapeutic decisions in the catheterization laboratory. A stumbling block to the determination of evidence-based therapies is our inability to simply and reliably share outcome data across multiple centers. We investigated whether a commonly used congenital heart disease catheterization database program (PedCath) could be used as an automatic catheterization data submission tool to a central database for outcome analysis. To test the feasibility of such a tool for collaborative outcomes research we formed a national group of seven congenital heart disease centers, the Mid-Atlantic Group of Interventional Cardiology, to warehouse and analyze catheterization data. We successfully modified PedCath to transfer the results of catheter-based therapies on 256 therapeutic procedures for atrial septal defect (ASD) closure, coarctation of the aorta angioplasty and stenting, and pulmonary and aortic balloon valvuloplasties over a 13-month pilot period. Short-term follow-up within the 13-month period was received on 31 patients. This study demonstrated the successful development of a simple process, requiring minimal data entry for investigators from around the world to share cardiac catheterization data for long-term outcome determination of catheter-based therapies for congenital heart disease.
authors.affiliation: Johns Hopkins University, Baltimore, Maryland 21287, and Children's Hospital of Central California, Madera, USA. aeveret3@jhmi.edu
authors.forename: Allen D
authors.initials: AD
authors.lastname: Everett
authors.forename: Richard
authors.initials: R
authors.lastname: Ringel
authors.forename: John F
authors.initials: JF
authors.lastname: Rhodes
authors.forename: Thomas P
authors.initials: TP
authors.lastname: Doyle
authors.forename: Carl Y
authors.initials: CY
authors.lastname: Owada
authors.forename: Ralf J
authors.initials: RJ
authors.lastname: Holzer
authors.forename: John P
authors.initials: JP
authors.lastname: Cheatham
authors.forename: Jeremy
authors.initials: J
authors.lastname: Ringewald
authors.forename: Varsha
authors.initials: V
authors.lastname: Bandisode
authors.forename: Yu-Li
authors.initials: YL
authors.lastname: Chen
authors.forename: D Scott
authors.initials: DS
authors.lastname: Lim
mesh_terms: D000293:Adolescent; D006328:Cardiac Catheterization / Q000592:standards* / Q000706:statistics & numerical data*; D016208:Databases, Factual; D005260:Female; D006330:Heart Defects, Congenital / Q000453:epidemiology / Q000209:etiology / Q000601:surgery*; D006801:Humans; D008297:Male; D008873:Mid-Atlantic Region / Q000453:epidemiology; D017063:Outcome Assessment, Health Care; D012042:Registries; D016896:Treatment Outcome; D014481:United States / Q000453:epidemiology