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International Fetal Cardiac Intervention Registry: A Worldwide Collaborative Description and Preliminary Outcomes

  • Anita J Moon-Grady
  • , Shaine A Morris
  • , Michael Belfort
  • , Ramen Chmait
  • , Joanna Dangel
  • , Roland Devlieger
  • , Stephen Emery
  • , Michele Frommelt
  • , Alberto Galindo
  • , Sarah Gelehrter
  • , Ulrich Gembruch
  • , Sofia Grinenco
  • , Mounira Habli
  • , Ulrike Herberg
  • , Edgar Jaeggi
  • , Mark Kilby
  • , Eftichia Kontopoulos
  • , Pablo Marantz
  • , Owen Miller
  • , Lucas Otaño
  • Carlos Pedra, Simone Pedra, Jay Pruetz, Ruben Quintero, Greg Ryan, Gurleen Sharland, John Simpson, Emanuel Vlastos, Wayne Tworetzky, Louise Wilkins-Haug, Dick Oepkes, International Fetal Cardiac Intervention Registry

Research output: Contribution to journalArticlepeer-review

72 Citations (Scopus)

Abstract

BACKGROUND: Invasive fetal cardiac intervention (FCI) has been reported in single-institution series, promoting technical and physiologic success.

OBJECTIVES: This study describes the creation of an international registry of cases presenting for FCI, intended to compile technical and outcome data from a multicenter cohort.

METHODS: For this initial analysis, the entire database of the International Fetal Cardiac Intervention Registry (IFCIR) was queried for details of diagnoses, procedures, and outcomes. Maternal-fetal dyads from January 2001 through June 2014 were included.

RESULTS: Eighteen institutions submitted data by data harvest. Of 370 cases entered, 245 underwent FCI: 100 aortic valvuloplasties from a previous single-center report (excluded from additional reporting here), an additional 86 aortic and 16 pulmonary valvuloplasties, 37 atrial septal cases, and 6 unclassified cases. FCI did not appear to affect overall survival to hospital discharge. Among live-born infants with a fetal diagnosis of aortic stenosis/evolving hypoplastic left heart syndrome, more than twice as many were discharged with biventricular circulation after successful FCI versus those meeting institutional criteria but without any or successful FCI (42.8% vs. 19.4%, respectively). When fetal deaths were counted as treatment failures, the percentages were similar: biventricular circulation at discharge was 31.3% versus 18.5% for those discharged with univentricular palliation. Survival to discharge for live-born fetuses with atrial restriction was similar to that of those undergoing technically successful versus unsuccessful FCI (63.6% vs. 46.7%, respectively), although criteria for diagnosis were nonuniform.

CONCLUSIONS: We describe the contents of the IFCIR and present post-natal data to suggest potential benefit to fetal therapy among pregnancies considered for possible intervention and support proposals for additional work.

Original languageEnglish
Pages (from-to)388-99
Number of pages12
JournalJournal of the American College of Cardiology
Volume66
Issue number4
DOIs
Publication statusPublished - 28 Jul 2015

Keywords

  • Female
  • Fetal Diseases
  • Fetal Therapies
  • Heart Defects, Congenital
  • Humans
  • Infant, Newborn
  • International Cooperation
  • Pregnancy
  • Pregnancy Outcome
  • Registries

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