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National Collaborative to Improve Care of Children With Complex Congenital Heart Disease (NPC-QIC)

Status

Enrolling

Conditions

Hypoplastic Left Heart Syndrome (HLHS)

Treatments

Other: Collaborative Learning Network

Study type

Observational

Funder types

Other

Identifiers

NCT02852031
2015-3866

Details and patient eligibility

About

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.

Full description

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.

Enrollment

1,000 estimated patients

Sex

All

Ages

Under 15 months old

Volunteers

No Healthy Volunteers

Inclusion criteria

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

Exclusion criteria

  • None

Trial design

1,000 participants in 1 patient group

Hypoplastic Left Heart Syndrome
Description:
Infants diagnosed with Hypoplastic Left Heart Syndrome (HLHS)
Treatment:
Other: Collaborative Learning Network

Trial contacts and locations

63

There are currently no registered sites for this trial.

Central trial contact

Mark Timbers

Timeline

Last updated: May 02, 2024

Start date

May 01, 2016 • 8 years ago

Today

Jan 22, 2025

End date

May 01, 2026 • in 1 year and 3 months

Sponsor of this trial

Data sourced from clinicaltrials.gov