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• W4241961672 abstract "We thank Chaudhry et al and the Children's Hospital Neonatal Consortium Cardiac Focus Group for the recognition and the interest in our recently published work. Moreover, we thank the authors for raising the important need for databases encompassing prenatal, neonatal, postnatal, and surgical data on patients with congenital heart defects. We agree that such databases are urgently needed to identify and stratify this patient population according to the risk of mortality and short-term complications such as neonatal morbidities, but also long-term complications such as neurodevelopmental disorders. Databases covering data from before to after delivery hold the potential to inform clinical practice and may ultimately provide the stepping-stones for improving outcomes. Previous studies have indicated that prenatal factors such as fetal growth and maternal medical conditions may impact outcomes in this population.1Gaynor J.W. Stopp C. Wypij D. Andropoulos D.B. Atallah J. Atz A.M. et al.Neurodevelopmental outcomes after cardiac surgery in infancy.Pediatrics. 2015; 135: 816-825Crossref PubMed Scopus (219) Google Scholar, 2Gaynor J.W. Parry S. Moldenhauer J.S. Simmons R.A. Rychik J. Ittenbach R.F. et al.The impact of the maternal-foetal environment on outcomes of surgery for congenital heart disease in neonates.Eur J Cardiothorac Surg. 2018; 54: 348-353Crossref PubMed Scopus (20) Google Scholar, 3Hansen T. Henriksen T.B. Bach C.C. Matthiesen N.B. Congenital heart defects and measures of prenatal brain growth: a systematic review.Pediatr Neurol. 2017; 72: 7-18.e11Abstract Full Text Full Text PDF PubMed Scopus (14) Google Scholar Perinatal factors such as timing of delivery and time to neonatal surgery,4Petit C.J. Rome J.J. Wernovsky G. Mason S.E. Shera D.M. Nicolson S.C. et al.Preoperative brain injury in transposition of the great arteries is associated with oxygenation and time to surgery, not balloon atrial septostomy.Circulation. 2009; 119: 709-716Crossref PubMed Scopus (172) Google Scholar, 5Lynch J.M. Buckley E.M. Schwab P.J. McCarthy A.L. Winters M.E. Busch D.R. et al.Time to surgery and preoperative cerebral hemodynamics predict postoperative white matter injury in neonates with hypoplastic left heart syndrome.J Thorac Cardiovasc Surg. 2014; 148: 2181-2188Abstract Full Text Full Text PDF PubMed Scopus (72) Google Scholar, 6Costello J.M. Pasquali S.K. Jacobs J.P. He X. Hill K.D. Cooper D.S. et al.Gestational age at birth and outcomes after neonatal cardiac surgery: an analysis of the Society of Thoracic Surgeons Congenital Heart Surgery Database.Circulation. 2014; 129: 2511-2517Crossref PubMed Scopus (95) Google Scholar and intraoperative factors such as hematocrit have also been shown to affect outcomes.7Jonas R.A. Wypij D. Roth S.J. Bellinger D.C. Visconti K.J. du Plessis A.J. et al.The influence of hemodilution on outcome after hypothermic cardiopulmonary bypass: results of a randomized trial in infants.J Thorac Cardiovasc Surg. 2003; 126: 1765-1774Abstract Full Text Full Text PDF PubMed Scopus (303) Google Scholar However, studies have been scarce and many studies have been limited by small sample sizes, and we agree with Chaudhry et al that several gaps in the current knowledge still exist. In Denmark, the setting of our study, several opportunities to combine individual level prenatal, perinatal, and postnatal data exist. Prenatal and perinatal data have been collected in the Danish Fetal Medicine Database (nationwide since 2011)8Ekelund C.K. Kopp T.I. Tabor A. Petersen O.B. The Danish Fetal Medicine database.Clin Epidemiol. 2016; 8: 479-483Crossref PubMed Scopus (12) Google Scholar and the Danish Medical Birth Registry (nationwide since 1973).9Bliddal M. Broe A. Pottegard A. Olsen J. Langhoff-Roos J. The Danish Medical Birth Register.Eur J Epidemiol. 2018; 33: 27-36Crossref PubMed Scopus (148) Google Scholar Neonatal data from all Danish neonatal intensive care units are currently collected in the Danish National Quality Database for Newborns (nationwide since 2016).10Schmidt M. Schmidt S.A.J. Adelborg K. Sundbøll J. Laugesen K. Ehrenstein V. et al.The Danish health care system and epidemiological research: from health care contacts to database records.Clin Epidemiol. 2019; 11: 563-591Crossref PubMed Scopus (195) Google Scholar,11Petersen J.P. Mølholm B. Cueto H. Pryds O.A. Trautner S. Zachariassen G. et al.[Neonatal survival and health in Denmark].Ugeskr Laeger. 2020; 182: 14AGoogle Scholar Lifelong follow- up is enabled by multiple sources, including hospital diagnoses and surgical procedures stored in the Danish National Patient Registry (nationwide since 1977)12Lynge E. Sandegaard J.L. Rebolj M. The Danish National Patient Register.Scand J Public Health. 2011; 39: 30-33Crossref PubMed Scopus (2430) Google Scholar; prescribed medication in the Danish National Prescription Registry (nationwide since 1994)13Kildemoes H.W. Sorensen H.T. Hallas J. The Danish National Prescription Registry.Scand J Public Health. 2011; 39: 38-41Crossref PubMed Scopus (1226) Google Scholar; and vital status in the Civil Registration System (nationwide since 1968).14Schmidt M. Pedersen L. Sørensen H.T. The Danish Civil Registration System as a tool in epidemiology.Eur J Epidemiol. 2014; 29: 541-549Crossref PubMed Scopus (1340) Google Scholar We strongly encourage the formation and use of large databases of detailed prenatal and postnatal data for the benefit of patients with congenital heart defects throughout the world. Premature congenital heart disease: building a comprehensive database to evaluate risks and guide interventionThe Journal of PediatricsVol. 230PreviewWe read with interest the report by Matthiesen et al.1 This large population based study found a 2-fold increase in incidence of preterm birth in the setting of major congenital heart disease (CHD) and delineated specific subgroups of CHD with even higher adjusted risks (specifically, right ventricular outflow tract obstructions). This study fills a major gap of knowledge with respect to understanding the link between certain CHD lesions and the insults to the fetal environment, and highlights that little is known about the impact of perinatal risk factors on outcomes for this vulnerable preterm population. Full-Text PDF" @default.
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