title: International Fetal Cardiac Intervention Registry: A Worldwide Collaborative Description and Preliminary Outcomes.
abstract: BACKGROUND
  Invasive fetal cardiac intervention (FCI) has been reported in single-institution series, promoting technical and physiologic success.
  
  
  OBJECTIVE
  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.
authors.affiliation: University of California-San Francisco, San Francisco, California. Electronic address: anita.moongrady@ucsf.edu.
authors.forename: Anita J
authors.initials: AJ
authors.lastname: Moon-Grady
authors.affiliation: Baylor College of Medicine, Houston, Texas.
authors.forename: Shaine A
authors.initials: SA
authors.lastname: Morris
authors.affiliation: Baylor College of Medicine, Houston, Texas.
authors.forename: Michael
authors.initials: M
authors.lastname: Belfort
authors.affiliation: Keck School of Medicine, University of Southern California, Los Angeles, California.
authors.forename: Ramen
authors.initials: R
authors.lastname: Chmait
authors.affiliation: Perinatal Cardiology Clinic, Medical University of Warsaw, Warsaw, Poland.
authors.forename: Joanna
authors.initials: J
authors.lastname: Dangel
authors.affiliation: University Hospital, KU Leuven, Leuven, Belgium.
authors.forename: Roland
authors.initials: R
authors.lastname: Devlieger
authors.affiliation: Magee Women's Hospital of the University of Pittsburgh Medical Center, Pittsburgh, Pennsylvania.
authors.forename: Stephen
authors.initials: S
authors.lastname: Emery
authors.affiliation: Children's Hospital of Wisconsin, Milwaukee, Wisconsin.
authors.forename: Michele
authors.initials: M
authors.lastname: Frommelt
authors.affiliation: Hospital Universitario 12 de Octubre, Facultad de Medicina, Universidad Complutense de Madrid, Madrid, Spain.
authors.forename: Alberto
authors.initials: A
authors.lastname: Galindo
authors.affiliation: C. S. Mott Children's Hospital, University of Michigan, Ann Arbor, Michigan.
authors.forename: Sarah
authors.initials: S
authors.lastname: Gelehrter
authors.affiliation: University Clinics of Bonn, Bonn, Germany.
authors.forename: Ulrich
authors.initials: U
authors.lastname: Gembruch
authors.affiliation: Hospital Italiano de Buenos Aires, Buenos Aires, Argentina.
authors.forename: Sofia
authors.initials: S
authors.lastname: Grinenco
authors.affiliation: Cincinnati Children's Hospital, Cincinnati, Ohio.
authors.forename: Mounira
authors.initials: M
authors.lastname: Habli
authors.affiliation: University of Bonn, Bonn, Germany.
authors.forename: Ulrike
authors.initials: U
authors.lastname: Herberg
authors.affiliation: Hospital for Sick Children, Toronto, Ontario, Canada.
authors.forename: Edgar
authors.initials: E
authors.lastname: Jaeggi
authors.affiliation: University of Birmingham, Edgbaston, Birmingham, United Kingdom.
authors.forename: Mark
authors.initials: M
authors.lastname: Kilby
authors.affiliation: Jackson Memorial Hospital, Miami, Florida.
authors.forename: Eftichia
authors.initials: E
authors.lastname: Kontopoulos
authors.affiliation: Hospital Italiano de Buenos Aires, Buenos Aires, Argentina.
authors.forename: Pablo
authors.initials: P
authors.lastname: Marantz
authors.affiliation: Evelina London Children's Hospital, London, United Kingdom.
authors.forename: Owen
authors.initials: O
authors.lastname: Miller
authors.affiliation: Hospital Italiano de Buenos Aires, Buenos Aires, Argentina.
authors.forename: Lucas
authors.initials: L
authors.lastname: Otaño
authors.affiliation: Hospital do Coração, São Paulo, Brazil.
authors.forename: Carlos
authors.initials: C
authors.lastname: Pedra
authors.affiliation: Hospital do Coração, São Paulo, Brazil.
authors.forename: Simone
authors.initials: S
authors.lastname: Pedra
authors.affiliation: Children's Hospital of Los Angeles, Los Angeles, California.
authors.forename: Jay
authors.initials: J
authors.lastname: Pruetz
authors.affiliation: University of Miami Miller School of Medicine, Miami, Florida.
authors.forename: Ruben
authors.initials: R
authors.lastname: Quintero
authors.affiliation: Mount Sinai Hospital, University of Toronto, Toronto, Ontario, Canada.
authors.forename: Greg
authors.initials: G
authors.lastname: Ryan
authors.affiliation: Evelina London Children's Hospital, London, United Kingdom.
authors.forename: Gurleen
authors.initials: G
authors.lastname: Sharland
authors.affiliation: Evelina London Children's Hospital, London, United Kingdom.
authors.forename: John
authors.initials: J
authors.lastname: Simpson
authors.affiliation: SSM Cardinal Glennon Children's Medical Center, St. Louis, Missouri.
authors.forename: Emanuel
authors.initials: E
authors.lastname: Vlastos
authors.affiliation: Boston Children's Hospital, Boston, Massachusetts.
authors.forename: Wayne
authors.initials: W
authors.lastname: Tworetzky
authors.affiliation: Brigham and Women's Hospital, Boston, Massachusetts.
authors.forename: Louise
authors.initials: L
authors.lastname: Wilkins-Haug
authors.affiliation: Leiden University Medical Center, Leiden, the Netherlands.
authors.forename: Dick
authors.initials: D
authors.lastname: Oepkes
mesh_terms: D005260:Female; D005315:Fetal Diseases / Q000175:diagnosis / Q000453:epidemiology / Q000601:surgery*; D046128:Fetal Therapies / Q000706:statistics & numerical data*; D006330:Heart Defects, Congenital / Q000175:diagnosis / Q000453:epidemiology / Q000601:surgery*; D006801:Humans; D007231:Infant, Newborn; D007391:International Cooperation; D011247:Pregnancy; D011256:Pregnancy Outcome / Q000453:epidemiology*; D012042:Registries
keywords: congenital heart defects; fetal cardiac intervention; fetal echocardiography; valvuloplasty