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

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

ArmDescriptionAssigned Intervention
Hypoplastic Left Heart Syndrome Infants diagnosed with Hypoplastic Left Heart Syndrome (HLHS)
  • Other: Collaborative Learning Network

Recruiting Locations

Children's National and nearby locations

Children's National Medical Center
Washington, District of Columbia 20010
Contact:
Kathleen Reed
202-476-5759
kkalinge@childrensnational.org

More Details

NCT ID
NCT02852031
Status
Recruiting
Sponsor
Children's Hospital Medical Center, Cincinnati

Study Contact

Bridget Butz
(513)803-9166
bridget.butz@cchmc.org

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.

Notice

Study information shown on this site is derived from ClinicalTrials.gov (a public registry operated by the National Institutes of Health). The listing of studies provided is not certain to be all studies for which you might be eligible. Furthermore, study eligibility requirements can be difficult to understand and may change over time, so it is wise to speak with your medical care provider and individual research study teams when making decisions related to participation.