Hypoplastic Left Heart Syndrome (HLHS)
Conditions
Brief 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.
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.
Interventions
OTHERCollaborative Learning Network
Sponsors
Children's Hospital Medical Center, Cincinnati
Study design
Observational model
CASE_ONLY
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
No minimum to 15 Months
Healthy volunteers
No
Inclusion criteria
* Fetuses or newborns diagnosed with HLHS or other univentricular condition * Intended to undergo Norwood procedure
Exclusion criteria
* None
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Relationship between the implementation of changes in care delivery with changes in the process | 15 months | The purpose of this data sharing is to facilitate QI and research activities. As more information is gathered in this registry, the study team will determine the data analyses methods to determine if the knowledge gained led to changes in care delivery and/or to better patient outcomes. |
Countries
Canada, United Kingdom, United States
Contacts
Primary ContactMark Timbers
Outcome results
None listed