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



Status:Recruiting
Conditions:Cardiology, Cardiology, Cardiology
Therapuetic Areas:Cardiology / Vascular Diseases
Healthy:No
Age Range:Any
Updated:4/17/2018
Start Date:May 2016
End Date:May 2028
Contact:Bridget Butz
Email:bridget.butz@cchmc.org
Phone:(513)803-9166

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Trial Summary
Trial Overview
Inclusion Criteria

National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) - A Collaborative Initiative to Improve Care of Children With Complex Congenital Heart Disease

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.

Inclusion Criteria:

- Fetuses or newborns diagnosed with HLHS or other univentricular condition

- Intended to undergo Norwood procedure

Exclusion Criteria:
We found this trial at
61
sites
Doernbecher Children's Hospital
Portland, Oregon 97239
Principal Investigator: Christina Ronai, MD
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Akron Children's Hospital
1 Perkins Square
Akron, Ohio 44308
(330) 543-1000
Akron Children's Hospital From humble beginnings as a day nursery in 1890, Akron Children
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Cincinnati Children's Hospital Medical Center
3333 Burnet Avenue # Mlc3008
Cincinnati, Ohio 45229
 1-513-636-4200 
Phone: 513-803-9166
Cincinnati Children's Hospital Medical Center Patients and families from across the region and around the...
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Nationwide Children's Hospital
700 Childrens Drive
Columbus, Ohio 43205
(616) 722-2000
Principal Investigator: Richard Fernandez, MD
Phone: 614-722-2561
Nationwide Children's Hospital At Nationwide Children’s, we are creating the future of pediatric health care....
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Columbus, OH
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Joe DiMaggio Children's Hospital
1000 Joe DiMaggio Drive
Hollywood, Florida 33021
Principal Investigator: Kak-Chen Chan, MD
Phone: 954-265-3437
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Hollywood, FL
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Childrens Hospital Los Angeles
4650 Sunset Blvd
Los Angeles, California 90027
 (323) 660-2450
Principal Investigator: Jay Pruetz
Phone: 323-361-5182
Childrens Hospital Los Angeles Children's Hospital Los Angeles is a 501(c)(3) nonprofit hospital for pediatric...
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Children's Hospital of Philadelphia
South 34th Street
Philadelphia, Pennsylvania 19104
 215-590-1000
Principal Investigator: Therese Giglia, MD
Phone: 215-435-6342
Children's Hospital of Philadelphia Since its start in 1855 as the nation's first hospital devoted...
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Children's Hospital of Pittsburgh of UPMC
4401 Penn Avenue
Pittsburgh, Pennsylvania 15224
412-692-5325
Principal Investigator: Evon Morell, MD
Children's Hospital of Pittsburgh of UPMC UPMC is one of the leading nonprofit health systems...
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Univ of Rochester Medical Center
601 Elmwood Avenue
Rochester, New York 14642
(585) 275-2100
Principal Investigator: Cecelia Meagher, MD
Phone: 585-275-4167
Univ of Rochester Medical Center One of the nation's top academic medical centers, the University...
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University of Michigan/ CS Mott Children's Hospital
Ann Arbor, Michigan 48167
Principal Investigator: Katherine Bates, MD
Phone: 734-615-9748
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Children's Healthcare of Atlanta
1405 Clifton Road NE
Atlanta, Georgia 30322
404-785-6000
Principal Investigator: Martha Clabby, MD
Phone: 404-785-6792
Children's Healthcare of Atlanta Whether treating a toddler in an emergency or supporting a teen...
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Children's Hospital Colorado
13123 E 16th Ave
Aurora, Colorado 80045
(720) 777-1234
Principal Investigator: Adel Younoszai, MD
Phone: 720-777-3366
Children's Hospital Colorado At Children's Hospital Colorado, we see more, treat more and heal more...
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University of Maryland Children's Hospital
Baltimore, Maryland 21201
Principal Investigator: Alica Chaves, MD
Phone: 410-328-0344
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Johns Hopkins Hospital
1800 Orleans St.
Baltimore, Maryland 21287
410-955-5000
Principal Investigator: Lasya Gaur, MD
Johns Hopkins Hospital Patients are the focus of everything we do at The Johns Hopkins...
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Baltimore, MD
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Children's of Alabama
Birmingham, Alabama 35233
Principal Investigator: Waldemar Carlo, MD
Phone: 205-934-3460
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Birmingham, AL
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Boston Children's Hospital
300 Longwood Ave
Boston, Massachusetts 02115
(617) 355-6000
Principal Investigator: David Brown, MD
Phone: 617-355-8427
Boston Children's Hospital Boston Children's Hospital is a 395-bed comprehensive center for pediatric health care....
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Children's Hospital at Montefiore
Bronx, New York 10467
Principal Investigator: Nicole Sutton, MD
Phone: 718-741-2543
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Medical University of South Carolina
171 Ashley Avenue
Charleston, South Carolina 29425
843-792-1414
Principal Investigator: Frances Woodward, RN
Phone: 843-792-3289
Medical University of South Carolina The Medical University of South Carolina (MUSC) has grown from...
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Levine Children's Hospital / Sanger Heart & Vascular Institute
Charlotte, North Carolina 28203
Principal Investigator: Resai Bengur, MD
Phone: 704-381-3949
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UVA Children's Hospital
Charlottesville, Virginia 22903
Principal Investigator: Jeffrey Vergales, MD
Phone: 434-924-9119
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Ann & Robert H. Lurie Children's Hospital of Chicago
225 E Chicago Ave
Chicago, Illinois 60611
(312) 227-4000
Principal Investigator: George Verghese, MD
Phone: 312-227-1549
Ann & Robert H. Lurie Children's Hospital of Chicago Ann & Robert H. Lurie Children
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University Hospitals Case Medical Center - Rainbow Babies & Children's Hospital, Pediatric Heart Center
Cleveland, Ohio 44092
Principal Investigator: Nancy Dobrolet, MD
Phone: 216-983-5261
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Cleveland, OH
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Cleveland Clinic Childrens Hospital
Cleveland, Ohio 44124
Principal Investigator: Francine Erenberg, MD
Phone: 216-444-4313
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Cleveland, OH
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Children's Medical Center of Dallas
1935 Medical District Dr
Dallas, Texas 75235
(214) 456-7000
Principal Investigator: Thomas Zellers, MD
Phone: 214-502-5294
Children's Medical Center of Dallas Children's Medical Center is private, not-for-profit, and is the fifth-largest...
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Duke Univ Med Ctr
2301 Erwin Rd
Durham, North Carolina 27710
919-684-8111
Principal Investigator: Michael Camitta, MD
Duke Univ Med Ctr As a world-class academic and health care system, Duke Medicine strives...
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Durham, NC
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Inova Children's Hospital
Falls Church, Virginia 22042
Principal Investigator: Harish Rudra, DO
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Falls Church, VA
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Cook Children's Medical Center
801 7th Avenue
Fort Worth, Texas 76104
(682) 885-4000
Principal Investigator: Lisa Rotten, MD
Phone: 682-885-4195
Cook Children's Medical Center Cook Children's Health Care System is a not-for-profit, nationally recognized pediatric...
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Fort Worth, TX
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University of Florida-UF Health
Gainesville, Florida 32606
Principal Investigator: Jennifer Co-Vu, MD
Phone: 352-281-6723
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Gainesville, FL
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PennState Hershey Medical Center--PennState Health Children's Hospital
Harrisburg, Pennsylvania 22908
Principal Investigator: Vincent Aluquin, MD
Phone: 717-531-8674
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Harrisburg, PA
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Texas Children's Hospital
6621 Fannin St
Houston, Texas 77030
(832) 824-1000
Principal Investigator: Elena Ocampo, MD
Phone: 832-826-5931
Texas Children's Hospital Texas Children's Hospital, located in Houston, Texas, is a not-for-profit organization whose...
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Houston, TX
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Riley Hospital for Children at IU Health
Indianapolis, Indiana 46202
Principal Investigator: Anne Farrell, MD
Phone: 317-274-8906
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Indianapolis, IN
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University of Iowa Children's Hospital
Iowa City, Iowa 52242
Principal Investigator: Benjamin Reinking, MD
Phone: 319-384-8365
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Iowa City, IA
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Baston Children's Hospital-University of Mississippi Medical Center
Jackson, Mississippi 39216
Principal Investigator: Avichal Aggarwal, MD
Phone: 601-984-5284
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Jackson, MS
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Ochsner Hospital For Children
Jefferson, Louisiana 70121
Principal Investigator: Ivory Crittendon, MD
Phone: 504-842-5200
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Jefferson, LA
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Children's Mercy Hospitals and Clinics
Kansas City, Missouri 64108
Principal Investigator: Amy Lay, MD
Phone: 816-895-5083
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Kansas City, MO
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Arkansas Children's Hospital
1 Children's Way
Little Rock, Arkansas 72202
(501) 364-1100
Principal Investigator: Michelle Moss, MD
Arkansas Children's Hospital Arkansas Children's Hospital (ACH) is the only pediatric medical center in Arkansas...
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Little Rock, AR
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UCLA Mattel Children's Hospital
Los Angeles, California 90095
Principal Investigator: Nancy Halnon, MD
Phone: 310-267-7616
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Los Angeles, CA
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Norton Children's Hospital
Louisville, Kentucky 40202
Principal Investigator: Ryan Leahy, MD
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Louisville, KY
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University of Wisconsin, American Family Children's
Madison, Wisconsin 53792
Principal Investigator: Sharda Srivinivasan, MD
Phone: 608-263-1470
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Le Bonheur Children's Hospital
Memphis, Tennessee 38103
Principal Investigator: Ranjit Philip, MD
Phone: 901-287-5955
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Nicklaus Children's Hospital
Miami, Florida 33155
Principal Investigator: Patel Madalsa, MD
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Children's Hospital of Wisconsin
9000 W Wisconsin Ave #270
Milwaukee, Wisconsin 53226
(414) 266-2000
Principal Investigator: Garick Hill, MD
Phone: 414-266-3524
Children's Hospital of Wisconsin Nothing matters more than our children. At Children's Hospital of Wisconsin,...
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Childrens Hospital & Clinics of Minnesota
Minneapolis, Minnesota 55404
Principal Investigator: Christine Hills, MD
Phone: 612-813-8800
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Minneapolis, MN
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University of Minnesota Masonic Children's Hospital
2450 Riverside Avenue
Minneapolis, Minnesota 55454
Principal Investigator: Rebecca Ameduri, MD
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Monroe Carell Jr. Children's Hospital at Vanderbilt
Nashville, Tennessee 37232
Principal Investigator: David Parra, MD
Phone: 615-512-0359
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Cohen Children's Medical Center Northwell Health
New Hyde Park, New York 11040
Principal Investigator: Elizabeth Vinas, RN, MD
Phone: 718-470-3460
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New Hyde Park, NY
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NYU Medical Center
New York, New York 10016
Principal Investigator: Anne Chun, MD
Phone: 718-612-2099
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New York, NY
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Advocate Children's Hospital
Oak Lawn, Illinois 60453
Principal Investigator: Andrew Vanbergen, MD
Phone: 708-684-3772
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Oak Lawn, IL
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Children's Hospital and Medical Center of Omaha
8200 Dodge St
Omaha, Nebraska 68114
(402) 955-5400
Principal Investigator: John Kugler, MD
Phone: 402-955-4350
Children's Hospital and Medical Center of Omaha Children's Hospital & Medical Center has a rich...
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Arnold Palmer Children's Hospital
Orlando, Florida
Principal Investigator: Craig Fleishman, MD
Phone: 407-497-7178
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Orlando, FL
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Lucile Packard Children's Hospital at Stanford
Palo Alto, California 94304
Principal Investigator: Gail Wright, MD
Phone: 650-815-8398
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Phoenix Children's Hospital
1919 E Thomas Rd
Phoenix, Arizona 85006
(602) 933-1000
Principal Investigator: Amy Svenson, MD
Phone: 480-363-7192
Phoenix Children's Hospital Phoenix Children's Hospital has provided hope, healing, and the best healthcare for...
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Sutter Medical Center Sacramento
Sacramento, California 95819
Principal Investigator: James Hill, MD
Phone: 916-262-9151
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UC Davis Children's Hospital
Sacramento, California 95817
Principal Investigator: Andrew Pelech, MD
Phone: 916-734-0835
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St. Louis Children's Hospital
Saint Louis, Missouri 63110
Principal Investigator: Caroline Lee, MD
Phone: 314-286-0522
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Saint Louis, MO
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Johns Hopkins All Children's Hospital
Saint Petersburg, Florida 33701
Phone: 727-767-3333
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Primary Children's Hospital
Salt Lake City, Utah 84143
Principal Investigator: Dongngan Truong, MD
Phone: 801-662-5573
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Salt Lake City, UT
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Seattle Children's Hospital
4800 Sand Point Way NE
Seattle, Washington 98105
(206) 987-2000
Principal Investigator: Titus Chan, MD
Seattle Children's Hospital Seattle Children’s Hospital specializes in meeting the unique physical, emotional and developmental...
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The Hospital for Sick Kids- University of Toronto
555 University Avenue
Toronto, Ontario M5G 1X8
Principal Investigator: Alejandro Floh, MD
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Childrens National Medical Center
111 Michigan Ave NW
Washington, District of Columbia
(202) 476-5000
Principal Investigator: Sarah Clauss, MD
Phone: 202-476-5759
Childrens National Medical Center As the nation’s children’s hospital, the mission of Children’s National Medical...
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Nemours Cardiac Center AI duPont Hospital for Children
Wilmington, Delaware 19803
Principal Investigator: Jose Ettedgui, MD
Phone: 302-651-6686
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