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

Part of paid clinical trials in Birmingham, Alabama.

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

Conditions

  • Hypoplastic Left Heart Syndrome (HLHS)

Eligibility Criteria

Sex
ALL
Age
N/A - 15 Months
Healthy Volunteers
Not accepted

Interventions

  • Collaborative Learning Network — OTHER

Study Details

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.

Key Dates

Start date
May 31, 2016
Status verified
Jun 2025
Primary completion
May 31, 2026
Completion
May 31, 2028

Study Design

Enrollment
1,000 participants (estimated)

Arms

  • Arm: Hypoplastic Left Heart Syndrome
    Infants diagnosed with Hypoplastic Left Heart Syndrome (HLHS)

Primary Outcome Measure

Relationship between the implementation of changes in care delivery with changes in the process [ Time Frame: 15 months ]

Central Contacts

Locations (61)

FacilityCityStateZIPSite coordinators
Children's of AlabamaBirminghamAlabama35233-
Phoenix Children's HospitalPhoenixArizona85006
Joseph Graziano, MD
Joseph Graziano, MD (PRINCIPAL_INVESTIGATOR)
Arkansas Children's HospitalLittle RockArkansas72202
Cindy Carpenter
Dala Zakaria, MD (PRINCIPAL_INVESTIGATOR)
Children's Hospital Los AngelesLos AngelesCalifornia90027
Jay Pruetz, MD (PRINCIPAL_INVESTIGATOR)
UCLA Mattel Children's HospitalLos AngelesCalifornia90095
Nancy Halnon
Nancy Halnon, MD (PRINCIPAL_INVESTIGATOR)
Lucile Packard Children's Hospital-StanfordPalo AltoCalifornia94304
Kelly Kirby
650-815-8398
Sharon Chen, MD (PRINCIPAL_INVESTIGATOR)
Sutter Medical Center-SacramentoSacramentoCalifornia95816
Michelle Agnew
916-262-9151
James Hill, MD (PRINCIPAL_INVESTIGATOR)
UC Davis Children's HospitalSacramentoCalifornia95817
Mary Zanobini
(916) 734-0835
Andrew Pelech, MD (PRINCIPAL_INVESTIGATOR)
Rady Children's HospitalSan DiegoCalifornia92123
Jessica Haley, MD
858-966-5855
Mark Abcede, MBA
619-987-0560
Jessica Haley, MD (PRINCIPAL_INVESTIGATOR)
Children's Hospital ColoradoAuroraColorado80045
Alison Artico Dumond
(720) 777-3366
Jonathan Kaufman, MD (PRINCIPAL_INVESTIGATOR)
Nemours Cardiac Center, A.I DuPont Hospital for ChildrenWilmingtonDelaware19803
Carol Prospero
302-651-6686
Erica Del Grippo, MD (PRINCIPAL_INVESTIGATOR)
Children's National Medical CenterWashington D.C.District of Columbia20010
Sarah Clauss, MD
Sarah Clauss, MD (PRINCIPAL_INVESTIGATOR)
University of Florida-UF HealthGainesvilleFlorida32606
Dalia Lopez-Colon
352-281-6723
Jennifer Co-Vu, MD (PRINCIPAL_INVESTIGATOR)
Nicklaus Children's HospitalMiamiFlorida33155
Madalsa Patel
Madalsa Patel, MD (PRINCIPAL_INVESTIGATOR)
Arnold Palmer Children's HospitalOrlandoFlorida32806
Karen Iacono
407-497-7178
Elise Riddle, MD (PRINCIPAL_INVESTIGATOR)
Johns Hopkins All Children's HospitalSt. PetersburgFlorida33701
Courtney Hogan
727-767-3333
Benton Ng, MD (PRINCIPAL_INVESTIGATOR)
Children's Healthcare of AtlantaAtlantaGeorgia30322
Sherry Smith
(404) 785-6792
Martha Clabby, MD (PRINCIPAL_INVESTIGATOR)
Ann and Robert H. Lurie Children's Hospital of ChicagoChicagoIllinois60611
Kathleen Van't Hoff
312-227-1549
Kiona Allen, MD (PRINCIPAL_INVESTIGATOR)
Advocate Children's HospitalOak LawnIllinois60453
Bonnie Hughes
(708)684-3772
Andrew Vanbergen, MD (PRINCIPAL_INVESTIGATOR)
Riley Hospital for Children at IU HealthIndianapolisIndiana46202
Dana Hartman
(317) 274-8906
Anne Farrell, MD (PRINCIPAL_INVESTIGATOR)
University of Iowa Children's HospitalIowa CityIowa52242
Trudy Pierick
(319) 384-8365
Benjamin Reinking, MD (PRINCIPAL_INVESTIGATOR)
Norton Children's HospitalLouisvilleKentucky40202
Ashley Rhinehart
Edward Kim, MD (PRINCIPAL_INVESTIGATOR)
Ochsner Hospital For ChildrenJeffersonLouisiana70121
Ivory Crittendon
504-842-5200
Ivory Crittendon, MD (PRINCIPAL_INVESTIGATOR)
Children's Hospital New OrleansNew OrleansLouisiana70118
Thomas Kimball, MD
Thomas Kimball, MD (PRINCIPAL_INVESTIGATOR)
University of Maryland Children's HospitalBaltimoreMaryland21201
Beth Sherfy
(410) 328-0344
Alicia Chaves, MD (PRINCIPAL_INVESTIGATOR)
Boston Children's HospitalBostonMassachusetts02115
David Brown, MD (PRINCIPAL_INVESTIGATOR)
University of Michigan C.S. Mott Children's HospitalAnn ArborMichigan48109
Karen Uzark
(734) 615-9748
Katherine Bates, MD (PRINCIPAL_INVESTIGATOR)
Children's Hospital and Clinics of MinnesotaMinneapolisMinnesota55404
Jocelyn Berbee
612-813-8800
Christine Hills, MD (PRINCIPAL_INVESTIGATOR)
University of Minnesota Masonic Children's HospitalMinneapolisMinnesota55454
Kavisha Shah, MD
Kavisha Shah, MD (PRINCIPAL_INVESTIGATOR)
Batson Children's Hospital-University of Mississippi Medical CenterJacksonMississippi39216
Stephanie Ghaleb
Stephanie Ghaleb (PRINCIPAL_INVESTIGATOR)
Children's Mercy Hospitals and ClinicsKansas CityMissouri64108
Lori Erickson
816-895-5083
Matthew Moehlmann, MD (PRINCIPAL_INVESTIGATOR)
St. Louis Children's HospitalSt LouisMissouri63110
Mayte Figueroa, MD
Mayte Figueroa, MD (PRINCIPAL_INVESTIGATOR)
Children's Hospital and Medical Center-OmahaOmahaNebraska68114
Jenny Strawn
(402) 955-4350
Christopher Curzon, DO (PRINCIPAL_INVESTIGATOR)
Cohen Children's Medical Center Northwell HealthNew Hyde ParkNew York11040
Elizabeth Vinas, RN, MD
718-470-3460
Elizabeth Vinas, RN, MD (PRINCIPAL_INVESTIGATOR)
Columbia University- NY PresbyterianNew YorkNew York10032
Anne Ferris, MD
212-342-1560
Anne Ferris, MD (PRINCIPAL_INVESTIGATOR)
NYU Medical CenterNew YorkNew York10016
Ralph Mosca, MD (PRINCIPAL_INVESTIGATOR)
University of Rochester Medical CenterRochesterNew York14642
Cecilia Meagher
Cecelia Meagher, MD (PRINCIPAL_INVESTIGATOR)
The Children's Hospital of MontefioreThe BronxNew York10467
Chelsie Cornelius
(718) 741-2543
Nicole Sutton, MD (PRINCIPAL_INVESTIGATOR)
Levine Children's Hospital-Sanger Heart and Vascular InstituteCharlotteNorth Carolina28203
Kari Crawford
(704) 381-3949
Amy Svenson, MD (PRINCIPAL_INVESTIGATOR)
Duke University Medical CenterDurhamNorth Carolina27705
Michael Camitta, MD
Michael Camitta, MD (PRINCIPAL_INVESTIGATOR)
Akron Children's HospitalAkronOhio44308-
Cincinnati Children's HospitalCincinnatiOhio45229
Mark Timbers
Cleveland Clinic Children's HospitalClevelandOhio44195
Francine Erenberg, MD
Francine Erenberg, MD (PRINCIPAL_INVESTIGATOR)
University Hospitals Case Medical Center - Rainbow Babies & Children's Hospital, Pediatric Heart CenterClevelandOhio44092
Sarah Plummer
Sarah Plummer, MD (PRINCIPAL_INVESTIGATOR)
Nationwide Children's HospitalColumbusOhio43023
Holly Miller-Tate
(614) 722-2561
Richard Fernandez, MD (PRINCIPAL_INVESTIGATOR)
Doernbecher Children's HospitalPortlandOregon97239
Christina Ronai
Christina Ronai, MD (PRINCIPAL_INVESTIGATOR)
PennState Hershey Medical Center--PennState Health Children's HospitalHarrisburgPennsylvania22908
Julie Jones
(717) 531-8674
Vincent Aluquin, MD (PRINCIPAL_INVESTIGATOR)
Children's Hospital of PhiladelphiaPhiladelphiaPennsylvania19104
Alyson Stagg
(215) 435-6342
Therese Giglia, MD (PRINCIPAL_INVESTIGATOR)
Children's Hospital of Pittsburgh of UPMCPittsburghPennsylvania15224
Cynthia Cardwell
412-692-6128
Evon Morell, MD (PRINCIPAL_INVESTIGATOR)
Medical University of South CarolinaCharlestonSouth Carolina29425
Frances Woodward
(843) 792-3289
Frances Woodward, RN, PNP (PRINCIPAL_INVESTIGATOR)
Le Bonheur Children's HospitalMemphisTennessee38103
Ranjit Raju Philip, MD (PRINCIPAL_INVESTIGATOR)
Monroe Carell Jr. Children's Hospital at VanderbiltNashvilleTennessee37232
David Parra, MD
David Parra, MD (PRINCIPAL_INVESTIGATOR)
Children's Medical Center of DallasDallasTexas75235
Kimberly Moore
214-502-5294
Thomas Zellers, MD (PRINCIPAL_INVESTIGATOR)
Cook Childrens Medical CenterFort WorthTexas76104
Lisa Roten, MD
682-885-4195
Yvette Johnson, MD
817-347-9601
Lisa Roten, MD (PRINCIPAL_INVESTIGATOR)
Texas Children's HospitalHoustonTexas77030
Elena Ocampo, MD (PRINCIPAL_INVESTIGATOR)
Primary Children's HospitalSalt Lake CityUtah84113
Linda Lambert
(801) 662-5573
Dongngan Truong, MD (PRINCIPAL_INVESTIGATOR)
UVA Children's HospitalCharlottesvilleVirginia22908
Leslie Peregoy
(434) 924-9119
Jeffrey Vergales, MD (PRINCIPAL_INVESTIGATOR)
Inova Children's HospitalFalls ChurchVirginia22042
Mechelle Fleischer
Harish Rudra, DO (PRINCIPAL_INVESTIGATOR)
Seattle Children's HospitalSeattleWashington98105
Titus Chan, MD (PRINCIPAL_INVESTIGATOR)
University of Wisconsin, American Family Children'sMadisonWisconsin53792
Sharda Srinivasan, MD
608-263-1470
Karoline Canada, NP
615-364-7777
Sharda Srivinivasan, MD (PRINCIPAL_INVESTIGATOR)
Children's Hospital of WisconsinMilwaukeeWisconsin53201
Nancy Rudd
(414) 266-3524
Nancy Rudd, MD (PRINCIPAL_INVESTIGATOR)

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