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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.

Conditions

Hypoplastic Left Heart Syndrome (HLHS)

Recruitment Status

Recruiting

Detailed 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.

Eligibility Criteria

Inclusion Criteria:

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

Exclusion Criteria:

None

Intervention

Intervention Type

Intervention Name

Other

Collaborative Learning Network

Gender

All

Min Age

N/A

Max Age

15 Months

Download Date

May 16, 2023

Principal Investigator

N/A

Primary Contact Information

Lauren Blizzard

lauren.blizzard@cchmc.org

For more information on this trial, visit clinicaltrials.gov.

Contact

For more information and to contact the study team:

National Collaborative to Improve Care of Children With Complex Congenital Heart Disease NCT02852031 Lauren Blizzard lauren.blizzard@cchmc.org