Summary

Eligibility
for people ages up to 15 months (full criteria)
Location
at Los Angeles, California and other locations
Dates
study started
completion around
Principal Investigator
by Nancy Halnon, MD

Description

Summary

The purpose of this initiative is to improve care and outcomes for infants with HLHS by expanding the NPC-QIC national registry to gather clinical care process, outcome, and developmental data on infants with HLHS between diagnosis and 12 months of age, by improving the use of standards into everyday practice across pediatric cardiology centers, and by engaging parents as partners in the process.

Official Title

National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) - A Collaborative Initiative to Improve Care of Children With Complex Congenital Heart Disease

Details

The purpose of this initiative is to improve care and outcomes for infants with HLHS by: 1) expanding the established NPC-QIC national registry to gather clinical care process, outcome, and developmental data on infants with HLHS between diagnosis and 12 months of age, 2) improving implementation of consensus standards, tested by teams, into everyday practice across pediatric cardiology centers, and 3) engaging parents as partners in improving care and outcomes.

Keywords

Hypoplastic Left Heart Syndrome (HLHS), Heart Diseases, Congenital Heart Defects, Hypoplastic Left Heart Syndrome, Collaborative Learning Network

Eligibility

You can join if…

Open to people ages up to 15 months

  • Fetuses or newborns diagnosed with HLHS or other univentricular condition
  • Intended to undergo Norwood procedure

You CAN'T join if...

- None

Locations

  • UCLA Mattel Children's Hospital accepting new patients
    Los Angeles California 90095 United States
  • Children's Hospital Los Angeles accepting new patients
    Los Angeles California 90027 United States

Lead Scientist at UCLA

  • Nancy Halnon, MD
    HS Clinical Professor, Pediatrics, Medicine. Authored (or co-authored) 42 research publications

Details

Status
accepting new patients
Start Date
Completion Date
(estimated)
Sponsor
Children's Hospital Medical Center, Cincinnati
ID
NCT02852031
Study Type
Observational [Patient Registry]
Participants
Expecting 1000 study participants
Last Updated