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
2024-05-02
Principal Investigator
N/A
Primary Contact Information
Mark Timbers
For more information on this trial, visit clinicaltrials.gov.
Contact
For more information and to contact the study team: