In Reply We thank Hussain et al for their thoughtful comments on our work1 and for raising several valid points regarding the use of retrospective registry data. The authors correctly identify the strengths of the Pediatric Cardiac Care Consortium in evaluating the long-term outcomes after interventions for congenital heart disease, and we acknowledge the limitations in capturing potential confounders and the relatively narrow scope of available outcomes by the use of clinical registries and national event data sets. In that regard, our next steps include surveys of survivors to assess quality of life and in-depth abstraction of surgical details that will inform us regarding potentially important confounders. Ultimately, our hope is that our work inspires continued collaboration between centers and various registries, as linking information from different existing sources enriches the knowledge gained by all. The Tetralogy of Fallot for Life initiative would be a welcome addition in this effort to characterize the altered natural history after interventions for tetralogy of Fallot.
Smith CA, Oster M, Kochilas L. We Can Learn From the Past, but We Must Pave the Future of Congenital Heart Disease Research—Reply. JAMA Cardiol. 2019;4(6):600. doi:10.1001/jamacardio.2019.1076
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