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NCT02852031Recruiting

National Collaborative to Improve Care of Children With Complex Congenital Heart Disease

Children's Hospital Medical Center, Cincinnati

Start Date

5/1/2016

Completion Date

5/1/2028

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.

Eligibility Criteria

Age Range: No minimum to No maximum

Inclusion Criteria: * Fetuses or newborns diagnosed with HLHS or other univentricular condition * Intended to undergo Norwood procedure Exclusion Criteria: * None

Interventions

OTHER

Collaborative Learning Network

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Conditions

Hypoplastic Left Heart Syndrome (HLHS)

Locations

Children's of Alabama

Birmingham, Alabama 35233

United States

Phoenix Children's Hospital

Phoenix, Arizona 85006

United States

Arkansas Children's Hospital

Little Rock, Arkansas 72202

United States

Children's Hospital Los Angeles

Los Angeles, California 90027

United States

UCLA Mattel Children's Hospital

Los Angeles, California 90095

United States

Lucile Packard Children's Hospital-Stanford

Palo Alto, California 94304

United States

Sutter Medical Center-Sacramento

Sacramento, California 95816

United States

UC Davis Children's Hospital

Sacramento, California 95817

United States

Rady Children's Hospital

San Diego, California 92123

United States

Children's Hospital Colorado

Aurora, Colorado 80045

United States

Nemours Cardiac Center, A.I DuPont Hospital for Children

Wilmington, Delaware 19803

United States

Children's National Medical Center

Washington D.C., District of Columbia 20010

United States

University of Florida-UF Health

Gainesville, Florida 32606

United States

Nicklaus Children's Hospital

Miami, Florida 33155

United States

Arnold Palmer Children's Hospital

Orlando, Florida 32806

United States

Johns Hopkins All Children's Hospital

St. Petersburg, Florida 33701

United States

Children's Healthcare of Atlanta

Atlanta, Georgia 30322

United States

Ann and Robert H. Lurie Children's Hospital of Chicago

Chicago, Illinois 60611

United States

Advocate Children's Hospital

Oak Lawn, Illinois 60453

United States

Riley Hospital for Children at IU Health

Indianapolis, Indiana 46202

United States

University of Iowa Children's Hospital

Iowa City, Iowa 52242

United States

Norton Children's Hospital

Louisville, Kentucky 40202

United States

Ochsner Hospital For Children

Jefferson, Louisiana 70121

United States

Children's Hospital New Orleans

New Orleans, Louisiana 70118

United States

University of Maryland Children's Hospital

Baltimore, Maryland 21201

United States

Boston Children's Hospital

Boston, Massachusetts 02115

United States

University of Michigan C.S. Mott Children's Hospital

Ann Arbor, Michigan 48109

United States

Children's Hospital and Clinics of Minnesota

Minneapolis, Minnesota 55404

United States

University of Minnesota Masonic Children's Hospital

Minneapolis, Minnesota 55454

United States

Batson Children's Hospital-University of Mississippi Medical Center

Jackson, Mississippi 39216

United States

Children's Mercy Hospitals and Clinics

Kansas City, Missouri 64108

United States

St. Louis Children's Hospital

St Louis, Missouri 63110

United States

Children's Hospital and Medical Center-Omaha

Omaha, Nebraska 68114

United States

Cohen Children's Medical Center Northwell Health

New Hyde Park, New York 11040

United States

NYU Medical Center

New York, New York 10016

United States

Columbia University- NY Presbyterian

New York, New York 10032

United States

University of Rochester Medical Center

Rochester, New York 14642

United States

The Children's Hospital of Montefiore

The Bronx, New York 10467

United States

Levine Children's Hospital-Sanger Heart and Vascular Institute

Charlotte, North Carolina 28203

United States

Duke University Medical Center

Durham, North Carolina 27705

United States

Akron Children's Hospital

Akron, Ohio 44308

United States

Cincinnati Children's Hospital

Cincinnati, Ohio 45229

United States

University Hospitals Case Medical Center - Rainbow Babies & Children's Hospital, Pediatric Heart Center

Cleveland, Ohio 44092

United States

Cleveland Clinic Children's Hospital

Cleveland, Ohio 44195

United States

Nationwide Children's Hospital

Columbus, Ohio 43023

United States

Doernbecher Children's Hospital

Portland, Oregon 97239

United States

PennState Hershey Medical Center--PennState Health Children's Hospital

Harrisburg, Pennsylvania 22908

United States

Children's Hospital of Philadelphia

Philadelphia, Pennsylvania 19104

United States

Children's Hospital of Pittsburgh of UPMC

Pittsburgh, Pennsylvania 15224

United States

Medical University of South Carolina

Charleston, South Carolina 29425

United States

Le Bonheur Children's Hospital

Memphis, Tennessee 38103

United States

Monroe Carell Jr. Children's Hospital at Vanderbilt

Nashville, Tennessee 37232

United States

Children's Medical Center of Dallas

Dallas, Texas 75235

United States

Cook Childrens Medical Center

Fort Worth, Texas 76104

United States

Texas Children's Hospital

Houston, Texas 77030

United States

Primary Children's Hospital

Salt Lake City, Utah 84113

United States

UVA Children's Hospital

Charlottesville, Virginia 22908

United States

Inova Children's Hospital

Falls Church, Virginia 22042

United States

Seattle Children's Hospital

Seattle, Washington 98105

United States

University of Wisconsin, American Family Children's

Madison, Wisconsin 53792

United States

Children's Hospital of Wisconsin

Milwaukee, Wisconsin 53201

United States

The Hospital for Sick Kids- University of Toronto

Toronto, Ontario M5G 1X8

Canada

Evelina London Children's Healthcare

London,

United Kingdom