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 Sex
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

ArmDescriptionAssigned Intervention
Hypoplastic Left Heart Syndrome Infants diagnosed with Hypoplastic Left Heart Syndrome (HLHS)
  • Other: Collaborative Learning Network

Recruiting Locations

Phoenix Children's Hospital
Phoenix 5308655, Arizona 5551752 85006
Contact:
Joseph Graziano, MD
jgraziano@phoenixchildrens.com

Arkansas Children's Hospital
Little Rock 4119403, Arkansas 4099753 72202
Contact:
Cindy Carpenter
carpentercynthia@uams.edu

Children's Hospital Los Angeles
Los Angeles 5368361, California 5332921 90027
Contact:
Jay Pruetz
jpruetz@chla.usc.edu

UCLA Mattel Children's Hospital
Los Angeles 5368361, California 5332921 90095
Contact:
Nancy Halnon
nhalnon@mednet.ucla.edu

Lucile Packard Children's Hospital-Stanford
Palo Alto 5380748, California 5332921 94304
Contact:
Kelly Kirby
650-815-8398
kkirby@stanfordchildrens.org

Sutter Medical Center-Sacramento
Sacramento 5389489, California 5332921 95816
Contact:
Michelle Agnew
916-262-9151
AgnewM@sutterhealth.org

UC Davis Children's Hospital
Sacramento 5389489, California 5332921 95817
Contact:
Mary Zanobini
(916) 734-0835
mfzanobini@ucdavis.edu

Rady Children's Hospital
San Diego 5391811, California 5332921 92123
Contact:
Jessica Haley, MD
858-966-5855
jhaley1@rchsd.org

Children's Hospital Colorado
Aurora 5412347, Colorado 5417618 80045
Contact:
Alison Artico Dumond
(720) 777-3366
alison.artico@childrenscolorado.org

Nemours Cardiac Center, A.I DuPont Hospital for Children
Wilmington 4145381, Delaware 4142224 19803
Contact:
Carol Prospero
302-651-6686
carol.prospero@nemours.org

Children's National Medical Center
Washington D.C. 4140963, District of Columbia 4138106 20010
Contact:
Sarah Clauss, MD
SClauss@childrensnational.org

University of Florida-UF Health
Gainesville 4156404, Florida 4155751 32606
Contact:
Dalia Lopez-Colon
352-281-6723
dalylc@ufl.edu

Nicklaus Children's Hospital
Miami 4164138, Florida 4155751 33155
Contact:
Madalsa Patel
Madalsa.Patel@mch.com

Arnold Palmer Children's Hospital
Orlando 4167147, Florida 4155751 32806
Contact:
Karen Iacono
407-497-7178
karen.iacono@orlandohealth.com

Johns Hopkins All Children's Hospital
St. Petersburg 4171563, Florida 4155751 33701
Contact:
Courtney Hogan
727-767-3333
chogan2@jhmi.edu

Children's Healthcare of Atlanta
Atlanta 4180439, Georgia 4197000 30322
Contact:
Sherry Smith
(404) 785-6792
sherry.smith@choa.org

Ann and Robert H. Lurie Children's Hospital of Chicago
Chicago 4887398, Illinois 4896861 60611
Contact:
Kathleen Van't Hoff
312-227-1549
kvanthof@luriechildrens.org

Advocate Children's Hospital
Oak Lawn 4904365, Illinois 4896861 60453
Contact:
Bonnie Hughes
(708)684-3772
bonnie.hughes@advocatehealth.com

Riley Hospital for Children at IU Health
Indianapolis 4259418, Indiana 4921868 46202
Contact:
Dana Hartman
(317) 274-8906
dmwellma@iupui.edu

University of Iowa Children's Hospital
Iowa City 4862034, Iowa 4862182 52242
Contact:
Trudy Pierick
(319) 384-8365
trudy-pierick@uiowa.edu

Norton Children's Hospital
Louisville 4299276, Kentucky 6254925 40202
Contact:
Ashley Rhinehart
ajrhin01@exchange.louisville.edu

Ochsner Hospital For Children
Jefferson 4328973, Louisiana 4331987 70121
Contact:
Ivory Crittendon
504-842-5200
icrittendon@ochsner.org

Children's Hospital New Orleans
New Orleans 4335045, Louisiana 4331987 70118
Contact:
Thomas Kimball, MD
thomas.kimball@lcmchealth.org

University of Maryland Children's Hospital
Baltimore 4347778, Maryland 4361885 21201
Contact:
Beth Sherfy
(410) 328-0344
bsherfy@umm.edu

Boston Children's Hospital
Boston 4930956, Massachusetts 6254926 02115
Contact:
David Brown
david.brown@cardio.chboston.org

University of Michigan C.S. Mott Children's Hospital
Ann Arbor 4984247, Michigan 5001836 48109
Contact:
Karen Uzark
(734) 615-9748
karenu@med.umich.edu

Children's Hospital and Clinics of Minnesota
Minneapolis 5037649, Minnesota 5037779 55404
Contact:
Jocelyn Berbee
612-813-8800
JBerbee@chc-pa.org

University of Minnesota Masonic Children's Hospital
Minneapolis 5037649, Minnesota 5037779 55454
Contact:
Kavisha Shah, MD
kshah@umn.edu

Batson Children's Hospital-University of Mississippi Medical Center
Jackson 4431410, Mississippi 4436296 39216
Contact:
Stephanie Ghaleb
sghaleb@umc.edu

Children's Mercy Hospitals and Clinics
Kansas City 4393217, Missouri 4398678 64108
Contact:
Lori Erickson
816-895-5083
laerickson@cmh.edu

St. Louis Children's Hospital
St Louis 4407066, Missouri 4398678 63110
Contact:
Mayte Figueroa, MD
Figueroamaytei@wustl.edu

Children's Hospital and Medical Center-Omaha
Omaha 5074472, Nebraska 5073708 68114
Contact:
Jenny Strawn
(402) 955-4350
jstrawn@childrensomaha.org

Cohen Children's Medical Center Northwell Health
New Hyde Park 5128514, New York 5128638 11040
Contact:
Elizabeth Vinas, RN, MD
718-470-3460
evinas@northwell.edu

NYU Medical Center
New York 5128581, New York 5128638 10016
Contact:
Ralph Mosca
ralph.mosca@nyulangone.org

Columbia University- NY Presbyterian
New York 5128581, New York 5128638 10032
Contact:
Anne Ferris, MD
212-342-1560
af240@columbia.edu

University of Rochester Medical Center
Rochester 5134086, New York 5128638 14642
Contact:
Cecilia Meagher
cecilia_meagher@urmc.rochester.edu

The Children's Hospital of Montefiore
The Bronx 5110266, New York 5128638 10467
Contact:
Chelsie Cornelius
(718) 741-2543
ccorneli@montefiore.org

Levine Children's Hospital-Sanger Heart and Vascular Institute
Charlotte 4460243, North Carolina 4482348 28203
Contact:
Kari Crawford
(704) 381-3949
kari.crawford@carolinashealthcare.org

Duke University Medical Center
Durham 4464368, North Carolina 4482348 27705
Contact:
Michael Camitta, MD
michael.camitta@duke.edu

Cincinnati Children's Hospital
Cincinnati 4508722, Ohio 5165418 45229
Contact:
Mark Timbers
mark.timbers@cchmc.org

University Hospitals Case Medical Center - Rainbow Babies & Children's Hospital, Pediatric Heart Center
Cleveland 5150529, Ohio 5165418 44092
Contact:
Sarah Plummer
sarah.plummer@uhhospitals.org

Cleveland Clinic Children's Hospital
Cleveland 5150529, Ohio 5165418 44195
Contact:
Francine Erenberg, MD
Erenbef@ccf.org

Nationwide Children's Hospital
Columbus 4509177, Ohio 5165418 43023
Contact:
Holly Miller-Tate
(614) 722-2561
holly.millertate@nationwidechildrens.org

Doernbecher Children's Hospital
Portland 5746545, Oregon 5744337 97239
Contact:
Christina Ronai
ronai@ohsu.edu

Children's Hospital of Philadelphia
Philadelphia 4560349, Pennsylvania 6254927 19104
Contact:
Alyson Stagg
(215) 435-6342
stagga@email.chop.edu

Children's Hospital of Pittsburgh of UPMC
Pittsburgh 5206379, Pennsylvania 6254927 15224
Contact:
Cynthia Cardwell
412-692-6128
cynthia.cardwell@chp.edu

Medical University of South Carolina
Charleston 4574324, South Carolina 4597040 29425
Contact:
Frances Woodward
(843) 792-3289
klinefl@musc.edu

Le Bonheur Children's Hospital
Memphis 4641239, Tennessee 4662168 38103
Contact:
Gina Guasco
gina.guasco@lebonheur.org

Monroe Carell Jr. Children's Hospital at Vanderbilt
Nashville 4644585, Tennessee 4662168 37232
Contact:
David Parra, MD
david.parra@vumc.org

Children's Medical Center of Dallas
Dallas 4684888, Texas 4736286 75235
Contact:
Kimberly Moore
214-502-5294
Kimberly.Moore@childrens.com

Cook Childrens Medical Center
Fort Worth 4691930, Texas 4736286 76104
Contact:
Lisa Roten, MD
682-885-4195
Lisa.Roten@cookchildrens.org

Texas Children's Hospital
Houston 4699066, Texas 4736286 77030
Contact:
Rocky Tsang
rtsang@bcm.edu

Primary Children's Hospital
Salt Lake City 5780993, Utah 5549030 84113
Contact:
Linda Lambert
(801) 662-5573
Linda.lambert@hsc.utah.edu

UVA Children's Hospital
Charlottesville 4752031, Virginia 6254928 22908
Contact:
Leslie Peregoy
(434) 924-9119
lsp3ju@hscmail.mcc.virginia.edu

Inova Children's Hospital
Falls Church 4758390, Virginia 6254928 22042
Contact:
Mechelle Fleischer
mechelle.fleischer@inova.org

Seattle Children's Hospital
Seattle 5809844, Washington 5815135 98105
Contact:
Titus Chan
titus.chan@seattlechildrens.org

University of Wisconsin, American Family Children's
Madison 5261457, Wisconsin 5279468 53792
Contact:
Sharda Srinivasan, MD
608-263-1470
ssrinivasan3@wisc.edu

Children's Hospital of Wisconsin
Milwaukee 5263045, Wisconsin 5279468 53201
Contact:
Nancy Rudd
(414) 266-3524
nrudd@chw.org

More Details

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

Study Contact

Mark Timbers
mark.timbers@cchmc.org

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.

For help using this page: trialstoday@researchmatch.org or call 855-514-7001

ResearchMatch is funded in part by the National Institutes of Health (NIH) Clinical and Translational Science Award (CTSA) program, led by the NIH’s National Center for Advancing Translational Sciences (NCATS), grants UL1TR000445 and 1U54RR032646-01, and grant U24TR001579 from NCATS and the National Library of Medicine. The content of this website is solely the responsibility of ResearchMatch and Vanderbilt University and does not necessarily represent the official views of the NIH, NCATS, or NLM.

Vanderbilt University Medical Center