National Collaborative to Improve Care of Children With Complex Congenital Heart Disease
Purpose
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.
Condition
- Hypoplastic Left Heart Syndrome (HLHS)
Eligibility
- Eligible Ages
- Under 15 Months
- Eligible Genders
- All
- Accepts Healthy Volunteers
- No
Inclusion Criteria
- Fetuses or newborns diagnosed with HLHS or other univentricular condition - Intended to undergo Norwood procedure
Exclusion Criteria
- None
Study Design
- Phase
- Study Type
- Observational [Patient Registry]
- Observational Model
- Case-Only
- Time Perspective
- Prospective
Arm Groups
| Arm | Description | Assigned Intervention |
|---|---|---|
| Hypoplastic Left Heart Syndrome | Infants diagnosed with Hypoplastic Left Heart Syndrome (HLHS) |
|
Recruiting Locations
Children's National and nearby locations
Washington, District of Columbia 20010
More Details
- NCT ID
- NCT02852031
- Status
- Recruiting
- Sponsor
- Children's Hospital Medical Center, Cincinnati
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.