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
Phoenix Children's Hospital
Phoenix, Arizona 85006
Phoenix, Arizona 85006
Arkansas Children's Hospital
Little Rock, Arkansas 72202
Little Rock, Arkansas 72202
Children's Hospital Los Angeles
Los Angeles, California 90027
Los Angeles, California 90027
UCLA Mattel Children's Hospital
Los Angeles, California 90095
Los Angeles, California 90095
Lucile Packard Children's Hospital-Stanford
Palo Alto, California 94304
Palo Alto, California 94304
Sutter Medical Center-Sacramento
Sacramento, California 95816
Sacramento, California 95816
UC Davis Children's Hospital
Sacramento, California 95817
Sacramento, California 95817
Rady Children's Hospital
San Diego, California 92123
San Diego, California 92123
Children's Hospital Colorado
Aurora, Colorado 80045
Aurora, Colorado 80045
Nemours Cardiac Center, A.I DuPont Hospital for Children
Wilmington, Delaware 19803
Wilmington, Delaware 19803
Children's National Medical Center
Washington, District of Columbia 20010
Washington, District of Columbia 20010
University of Florida-UF Health
Gainesville, Florida 32606
Gainesville, Florida 32606
Arnold Palmer Children's Hospital
Orlando, Florida 32806
Orlando, Florida 32806
Johns Hopkins All Children's Hospital
Saint Petersburg, Florida 33701
Saint Petersburg, Florida 33701
Children's Healthcare of Atlanta
Atlanta, Georgia 30322
Atlanta, Georgia 30322
Ann and Robert H. Lurie Children's Hospital of Chicago
Chicago, Illinois 60611
Chicago, Illinois 60611
Advocate Children's Hospital
Oak Lawn, Illinois 60453
Oak Lawn, Illinois 60453
Riley Hospital for Children at IU Health
Indianapolis, Indiana 46202
Indianapolis, Indiana 46202
University of Iowa Children's Hospital
Iowa City, Iowa 52242
Iowa City, Iowa 52242
Norton Children's Hospital
Louisville, Kentucky 40202
Louisville, Kentucky 40202
Ochsner Hospital For Children
Jefferson, Louisiana 70121
Jefferson, Louisiana 70121
Children's Hospital New Orleans
New Orleans, Louisiana 70118
New Orleans, Louisiana 70118
University of Maryland Children's Hospital
Baltimore, Maryland 21201
Baltimore, Maryland 21201
Boston Children's Hospital
Boston, Massachusetts 02115
Boston, Massachusetts 02115
University of Michigan C.S. Mott Children's Hospital
Ann Arbor, Michigan 48109
Ann Arbor, Michigan 48109
Children's Hospital and Clinics of Minnesota
Minneapolis, Minnesota 55404
Minneapolis, Minnesota 55404
University of Minnesota Masonic Children's Hospital
Minneapolis, Minnesota 55454
Minneapolis, Minnesota 55454
Batson Children's Hospital-University of Mississippi Medical Center
Jackson, Mississippi 39216
Jackson, Mississippi 39216
Children's Mercy Hospitals and Clinics
Kansas City, Missouri 64108
Kansas City, Missouri 64108
St. Louis Children's Hospital
Saint Louis, Missouri 63110
Saint Louis, Missouri 63110
Children's Hospital and Medical Center-Omaha
Omaha, Nebraska 68114
Omaha, Nebraska 68114
The Children's Hospital of Montefiore
Bronx, New York 10467
Bronx, New York 10467
Cohen Children's Medical Center Northwell Health
New Hyde Park, New York 11040
New Hyde Park, New York 11040
Columbia University- NY Presbyterian
New York, New York 10032
New York, New York 10032
University of Rochester Medical Center
Rochester, New York 14642
Rochester, New York 14642
Levine Children's Hospital-Sanger Heart and Vascular Institute
Charlotte, North Carolina 28203
Charlotte, North Carolina 28203
Duke University Medical Center
Durham, North Carolina 27705
Durham, North Carolina 27705
University Hospitals Case Medical Center - Rainbow Babies & Children's Hospital, Pediatric Heart Center
Cleveland, Ohio 44092
Cleveland, Ohio 44092
Cleveland Clinic Children's Hospital
Cleveland, Ohio 44195
Cleveland, Ohio 44195
Nationwide Children's Hospital
Columbus, Ohio 43023
Columbus, Ohio 43023
Children's Hospital of Philadelphia
Philadelphia, Pennsylvania 19104
Philadelphia, Pennsylvania 19104
Children's Hospital of Pittsburgh of UPMC
Pittsburgh, Pennsylvania 15224
Pittsburgh, Pennsylvania 15224
Medical University of South Carolina
Charleston, South Carolina 29425
Charleston, South Carolina 29425
Le Bonheur Children's Hospital
Memphis, Tennessee 38103
Memphis, Tennessee 38103
Monroe Carell Jr. Children's Hospital at Vanderbilt
Nashville, Tennessee 37232
Nashville, Tennessee 37232
Children's Medical Center of Dallas
Dallas, Texas 75235
Dallas, Texas 75235
Cook Childrens Medical Center
Fort Worth, Texas 76104
Fort Worth, Texas 76104
Primary Children's Hospital
Salt Lake City, Utah 84113
Salt Lake City, Utah 84113
UVA Children's Hospital
Charlottesville, Virginia 22908
Charlottesville, Virginia 22908
Inova Children's Hospital
Falls Church, Virginia 22042
Falls Church, Virginia 22042
Seattle Children's Hospital
Seattle, Washington 98105
Seattle, Washington 98105
University of Wisconsin, American Family Children's
Madison, Wisconsin 53792
Madison, Wisconsin 53792
Children's Hospital of Wisconsin
Milwaukee, Wisconsin 53201
Milwaukee, Wisconsin 53201
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.