Development of the MAGIC congenital heart disease catheterization database for interventional outcome studies.
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.
Everett
Allen D
AD
Johns Hopkins University, Baltimore, Maryland 21287, and Children's Hospital of Central California, Madera, USA. aeveret3@jhmi.edu
Ringel
Richard
R
Rhodes
John F
JF
Doyle
Thomas P
TP
Owada
Carl Y
CY
Holzer
Ralf J
RJ
Cheatham
John P
JP
Ringewald
Jeremy
J
Bandisode
Varsha
V
Chen
Yu-Li
YL
Lim
D Scott
DS
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