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Assessing enrollment of eligible infants in the national pediatric cardiology quality improvement collaborative (NPC-QIC) through linkage to the pediatric cardiac critical care consortium (PC4) registry.

  • Bates, Katherine E1
  • Donohue, Janet2
  • Zhang, Wenying3
  • Mikesell, Katherine1
  • Anderson, Jeffrey B2
  • Bingler, Michael4
  • Brown, David W5
  • Gaies, Michael G2
  • Ghanayem, Nancy6
  • Lambert, Linda M7
  • Pasquali, Sara K1
  • Schidlow, David5
  • Vergales, Jeffrey8
  • Schumacher, Kurt R1
  • 1 Division of Pediatric Cardiology, Congenital Heart Center, C.S. Mott Children's Hospital, University of Michigan Medical School, Ann Arbor, MI, USA.
  • 2 The Heart Institute, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
  • 3 Center for Healthcare Outcomes and Policy, University of Michigan, Ann Arbor, MI, USA.
  • 4 Nemours Cardiac Center, Nemours Children's Hospital, Orlando, FL, USA.
  • 5 Department of Cardiology, Boston Children's Hospital, Boston, MA, USA.
  • 6 Department of Pediatrics, University of Chicago Comer Children's Hospital and Advocate Children's Hospital, Chicago, IL.
  • 7 Primary Children's Hospital Heart Center, Salt Lake City, UT, USA.
  • 8 Division of Pediatric Cardiology, University of Virginia, Charlottesville, VA, USA.
Published Article
Cardiology in the Young
Cambridge University Press
Publication Date
Feb 01, 2024
DOI: 10.1017/S1047951123001671
PMID: 37434511


The National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) lacks a rigorous enrollment audit process, unlike other collaborative networks. Most centers require individual families to consent to participate. It is unknown whether there is variation across centers or biases in enrollment. We used the Pediatric Cardiac Critical Care Consortium (PC4) registry to assess enrollment rates in NPC-QIC for those centers participating in both registries using indirect identifiers (date of birth, date of admission, gender, and center) to match patient records. All infants born 1/1/2018-12/31/2020 and admitted 30 days of life were eligible. In PC4, all infants with a fundamental diagnosis of hypoplastic left heart or variant or who underwent a surgical or hybrid Norwood or variant were eligible. Standard descriptive statistics were used to describe the cohort and center match rates were plotted on a funnel chart. Of 898 eligible NPC-QIC patients, 841 were linked to 1,114 eligible PC4 patients (match rate 75.5%) in 32 centers. Match rates were lower in patients of Hispanic/Latino ethnicity (66.1%, p = 0.005), and those with any specified chromosomal abnormality (57.4%, p = 0.002), noncardiac abnormality (67.8%, p = 0.005), or any specified syndrome (66.5%, p = 0.001). Match rates were lower for patients who transferred to another hospital or died prior to discharge. Match rates varied from 0 to 100% across centers. It is feasible to match patients between the NPC-QIC and PC4 registries. Variation in match rates suggests opportunities for improvement in NPC-QIC patient enrollment.

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