Summary

Eligibility
for people ages up to 15 months (full criteria)
Location
at UC Davis UCLA
Dates
study started
estimated completion
Principal Investigator
by Nancy Halnon, MD (ucla)Andrew Pelech (ucdavis)

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 Heart Defects, Congenital 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
  • UC Davis Children's Hospital accepting new patients
    Sacramento California 95817 United States
  • Rady Children's Hospital accepting new patients
    San Diego California 92123 United States
  • Children's Hospital Los Angeles accepting new patients
    Los Angeles California 90027 United States

Lead Scientists at University of California Health

Details

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