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.
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.
Study Type
OBSERVATIONAL
Enrollment
1,000
Relationship between the implementation of changes in care delivery with changes in the process
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.
Time frame: 15 months
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Children's of Alabama
Birmingham, Alabama, United States
COMPLETEDPhoenix Children's Hospital
Phoenix, Arizona, United States
RECRUITINGArkansas Children's Hospital
Little Rock, Arkansas, United States
RECRUITINGChildren's Hospital Los Angeles
Los Angeles, California, United States
RECRUITINGUCLA Mattel Children's Hospital
Los Angeles, California, United States
RECRUITINGLucile Packard Children's Hospital-Stanford
Palo Alto, California, United States
RECRUITINGSutter Medical Center-Sacramento
Sacramento, California, United States
RECRUITINGUC Davis Children's Hospital
Sacramento, California, United States
RECRUITINGRady Children's Hospital
San Diego, California, United States
RECRUITINGChildren's Hospital Colorado
Aurora, Colorado, United States
RECRUITING...and 53 more locations