Long-Term Follow-Up of Patients Who Have Participated in Children's Oncology Group Studies



Status:Recruiting
Conditions:Cancer, Cancer, Other Indications, Brain Cancer, Blood Cancer, Infectious Disease, Lymphoma, Hematology, Leukemia
Therapuetic Areas:Hematology, Immunology / Infectious Diseases, Oncology, Other
Healthy:No
Age Range:Any
Updated:2/24/2019
Start Date:May 19, 2008

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Umbrella Long-Term Follow-Up Protocol

This clinical trial keeps track of and collects follow-up information from patients who are
currently enrolled on or have participated in a Children's Oncology Group study. Developing a
way to keep track of patients who have participated in Children's Oncology Group studies may
allow doctors learn more about the long-term effects of cancer treatment and help them reduce
problems related to treatment and improve patient quality of life.

PRIMARY OBJECTIVES:

I. To develop a mechanism for tracking and retaining patients enrolled on Children's Oncology
Group (COG) protocols.

II. To maintain regular, lifetime contact with patients in order to obtain current
identification and contact information, and self/parent-reported health status.

III. To locate patients who are lost-to-follow-up for COG (or Legacy Group) protocols
targeted for follow-up by the Long-Term Follow-Up Center (LTFC).

IV. To provide current patient contact information and self/parent-reported health status
updates to the COG Statistics and Data Center (SDC) and to each patient?s COG institution.

V. To facilitate collection of protocol-specific outcome data through collaboration with the
LTFC Oversight Committee, the SDC, and the member institutions.

OUTLINE: This is an umbrella protocol for all long-term follow-up at COG institutions.

Approximately 6 months after completion of therapy patients receive a mailed packet
introducing the Long-Term Follow-Up Center (LTFC) and containing information related to their
individualized, protocol-specific follow-up guidelines. Patients are asked to complete a
patient response form, verify information provided in packet, update contact information, and
complete a Health Status Update Form. The Health Status Update Form is a brief document
including questions about current health status, disease status, and cancer therapy received
since the last mailing. Patients receive protocol-specific automatic reminders, and may
respond by use of postage prepaid envelopes, email, or 24-hour toll-free telephone number.

Inclusion Criteria:

- The patient must be enrolled on a frontline COG therapeutic trial for treatment of a
primary malignancy and is nearing completion of or has recently completed protocol
treatment (within the past 180 days)*; or the patient must have been enrolled on a COG
(or Legacy Group) therapeutic or non-therapeutic trial targeted for long-term
follow-up by ALTE05N1

- Hodgkin lymphoma

- CCG 5942

- POG 9425

- POG 9426

- AHOD0031

- Brain tumor

- A9961

- Acute lymphoblastic leukemia

- POG 9404

- Osteosarcoma

- POG 9754

- Stem cell transplantation

- ASCT0631D

- Rhabdomyosarcoma

- IRS-III

- IRS-IV

- Note: For purposes of enrollment onto this study, completion of treatment is
defined as the date protocol therapy was terminated as reported (or will be
reported) on this patient?s last ?Reporting Period Worksheet/CRF? for their
frontline therapeutic protocol; patients become eligible as they approach this
date, and remain eligible for 180 days following the date that protocol therapy
was terminated; early termination of protocol therapy per the decision of the
patient, family and/or investigator does NOT preclude enrollment on this study

- Note: For purposes of eligibility for ALTE05N1, ?early termination of protocol
therapy? means that the patient has finished protocol therapy and will not
receive further treatment; patients whose therapy is terminated early due to
toxicity or who opt out of an end-of-therapy randomization (e.g., randomization
to continue with an experimental agent versus [vs.] no further treatment) are
eligible because they will not be receiving further therapy; however, a patient
who is removed from protocol therapy or opts to discontinue protocol
participation early in the course of treatment (e.g., following Induction) is not
eligible

- The patient must reside in the U.S. on the date of enrollment to ALTE05N1

- All patients and/or their parents or legal guardians must sign a written informed
consent

- All institutional, Food and Drug Administration (FDA), and National Cancer Institute
(NCI) requirements for human studies must be met
We found this trial at
164
sites
Atlanta, Georgia 30322
Principal Investigator: Howard M. Katzenstein
Phone: 800-811-8480
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1201 Camino de Salud Northeast
Albuquerque, New Mexico 87131
(505) 272-4946
Principal Investigator: John F. Kuttesch
Phone: 505-925-0366
University of New Mexico Cancer Center It’s been 40 years since the New Mexico State...
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4900 Mueller Boulevard
Austin, Texas 78723
(512) 324-0000
Principal Investigator: Amy C. Fowler
Phone: 214-648-7097
Dell Children's Medical Center of Central Texas Welcome to Dell Children
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2545 Schoenersville Rd
Bethlehem, Pennsylvania 18017
(484) 884-2200
Principal Investigator: Philip M. Monteleone
Phone: 484-884-2201
Lehigh Valley Hospital - Muhlenberg At Lehigh Valley Health Network, we continually go the extra...
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1600 7th Avenue
Birmingham, Alabama 35233
(205) 638-9100
Principal Investigator: Smita Bhatia
Phone: 205-638-2121
Children's Hospital of Alabama Children
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666 Elm Street
Buffalo, New York 14263
(716) 845-2300
Principal Investigator: Denise A. Rokitka
Phone: 800-767-9355
Roswell Park Cancer Institute Welcome to Roswell Park Cancer Institute (RPCI), America's first cancer center...
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1 South Prospect Street
Burlington, Vermont 05401
802-656-8990
Principal Investigator: Jessica L. Heath
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3333 Burnet Avenue # Mlc3008
Cincinnati, Ohio 45229
 1-513-636-4200 
Principal Investigator: Rajaram Nagarajan
Phone: 513-636-3549
Cincinnati Children's Hospital Medical Center Patients and families from across the region and around the...
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11100 Euclid Avenue
Cleveland, Ohio 44106
(216) 844-1000
Principal Investigator: John J. Letterio
Phone: 216-844-5437
Rainbow Babies and Children's Hospital UH Rainbow Babies & Children’s Hospital is a 244-bed, full-service...
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700 Childrens Drive
Columbus, Ohio 43205
(616) 722-2000
Principal Investigator: Mark A. Ranalli
Phone: 614-722-2708
Nationwide Children's Hospital At Nationwide Children’s, we are creating the future of pediatric health care....
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3533 South Alameda Street
Corpus Christi, Texas 78411
(361) 694-5000
Principal Investigator: Nkechi I. Mba
Phone: 361-694-5311
Driscoll Children's Hospital Driscoll Children's Hospital was built because Clara Driscoll's will requested that a...
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7777 Forest Ln # C840
Dallas, Texas 75230
(972) 566-7000
Principal Investigator: Stanton C. Goldman
Phone: 972-566-5588
Medical City Dallas Hospital If you have concerns for your health, that of a family...
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1200 Pleasant Street
Des Moines, Iowa 50309
(515) 241-KIDS
Principal Investigator: Wendy L. Woods-Swafford
Phone: 515-241-6729
Blank Children's Hospital Blank Children's Hospital is completely dedicated to meeting the unique health care...
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1500 E Duarte Rd
Duarte, California 91010
(626) 256-4673
Principal Investigator: Anna B. Pawlowska
Phone: 800-826-4673
City of Hope Comprehensive Cancer Center City of Hope is a leading research and treatment...
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3300 Gallows Road
Falls Church, Virginia 22042
(703) 776-4001
Principal Investigator: Marshall A. Schorin
Phone: 703-208-6650
Inova Fairfax Hospital Inova Fairfax Hospital, Inova's flagship hospital, is an 833-bed, nationally recognized regional...
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9981 S Healthpark Dr # 465
Fort Myers, Florida 33908
239-343-5000
Lee Memorial Health System Our origins can be traced to the Fall of 1916 when...
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100 Michigan Street Northeast
Grand Rapids, Michigan 49503
616.391.9000
Principal Investigator: David S. Dickens
Phone: 616-267-1925
Helen DeVos Children's Hospital at Spectrum Health Helen DeVos Children's Hospital, located in Grand Rapids,...
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282 Washington St
Hartford, Connecticut 06106
(860) 545-9000
Principal Investigator: Michael S. Isakoff
Phone: 860-545-9981
Connecticut Children's Medical Center Connecticut Children’s Medical Center is a nationally recognized, 187-bed not-for-profit children’s...
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2500 N State St
Jackson, Mississippi 39216
(601) 984-1000
Principal Investigator: Gail C. Megason
Phone: 601-815-6700
University of Mississippi Medical Center The University of Mississippi Medical Center, located in Jackson, is...
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1800 West Charleston Boulevard
Las Vegas, Nevada 89102
(702) 383-2000
Principal Investigator: Alan K. Ikeda
Phone: 702-384-0013
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529 West Markham Street
Little Rock, Arkansas 72205
(501) 686-7000
University of Arkansas for Medical Sciences The University of Arkansas for Medical Sciences (UAMS) in...
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4650 Sunset Blvd
Los Angeles, California 90027
 (323) 660-2450
Principal Investigator: Leo Mascarenhas
Phone: 323-361-4110
Childrens Hospital Los Angeles Children's Hospital Los Angeles is a 501(c)(3) nonprofit hospital for pediatric...
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8700 Beverly Blvd # 8211
Los Angeles, California 90048
(1-800-233-2771)
Principal Investigator: Fataneh (Fae) Majlessipour
Phone: 310-423-8965
Cedars Sinai Med Ctr Cedars-Sinai is known for providing the highest quality patient care. Our...
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262 Danny Thomas Pl
Memphis, Tennessee 38105
(901) 495-3300
Principal Investigator: Wayne L. Furman
Phone: 866-278-5833
St. Jude Children's Research Hospital St. Jude is unlike any other pediatric treatment and research...
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601 Children's Lane
Norfolk, Virginia 23507
(757) 668-7000
Principal Investigator: Eric J. Lowe
Phone: 757-668-7243
Children's Hospital of The King's Daughters Children
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1201 W La Veta Ave
Orange, California 92868
(714) 997-3000
Principal Investigator: Elyssa M. Rubin
Phone: 714-997-3000
Children's Hospital of Orange County For more than 45 years, CHOC Children’s has been steadfastly...
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1717 South Orange Avenue # 100
Orlando, Florida 32806
(407) 650-7000
Nemours Children's Clinic - Orlando Located near downtown Orlando, Nemours Children’s Clinic, Orlando is a...
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5153 North 9th Avenue
Pensacola, Florida 32504
(850) 505-4700
Principal Investigator: Ramamoorthy Nagasubramanian
Phone: 407-650-7150
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530 Northeast Glen Oak Avenue
Peoria, Illinois 61603
(309) 624-4945
Principal Investigator: Pedro A. De Alarcon
Phone: 888-226-4343
Saint Jude Midwest Affiliate The Jim and Trudy Maloof St. Jude Midwest Affiliate Clinic was...
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South 34th Street
Philadelphia, Pennsylvania 19104
 215-590-1000
Principal Investigator: Jill P. Ginsberg
Phone: 215-590-2810
Children's Hospital of Philadelphia Since its start in 1855 as the nation's first hospital devoted...
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4401 Penn Avenue
Pittsburgh, Pennsylvania 15224
412-692-5325
Principal Investigator: Arthur K. Ritchey
Phone: 412-692-5573
Children's Hospital of Pittsburgh of UPMC UPMC is one of the leading nonprofit health systems...
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3181 Southwest Sam Jackson Park Road
Portland, Oregon 97239
503 494-8311
Principal Investigator: Linda C. Stork
Phone: 503-494-1080
Oregon Health and Science University In 1887, the inaugural class of the University of Oregon...
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620 John Paul Jones Cir
Portsmouth, Virginia 23708
(757) 953-5008
Principal Investigator: Bethany M. Mikles
Phone: 757-953-3293
Naval Medical Center - Portsmouth Naval Medical Center Portsmouth, Virginia has proudly served the military...
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593 Eddy Street
Providence, Rhode Island 02903
401-444-4000
Principal Investigator: Jennifer J. Greene Welch
Phone: 401-444-1488
Rhode Island Hospital Founded in 1863, Rhode Island Hospital in Providence, RI, is a private,...
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401 College Street
Richmond, Virginia 23298
(804) 828-0450
Principal Investigator: Madhu S. Gowda
Phone: 804-628-1939
Virginia Commonwealth University Massey Cancer Center Founded in 1974, VCU Massey Cancer Center is a...
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60 Crittenden Blvd # 70
Rochester, New York 14642
(585) 275-2121
Principal Investigator: Angela R. Girvin
Phone: 585-275-5830
University of Rochester The University of Rochester is one of the country's top-tier research universities....
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7700 Floyd Curl Dr
San Antonio, Texas 78229
(210) 575-7000
Methodist Children's Hospital of South Texas Methodist Children
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4502 Medical Drive
San Antonio, Texas 78284
(210) 567-7000
Principal Investigator: Anne-Marie R. Langevin
Phone: 210-450-3800
University of Texas Health Science Center at San Antonio The University of Texas Health Science...
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3020 Childrens way
San Diego, California 92123
(858) 576-1700
Principal Investigator: William D. Roberts
Phone: 858-966-5934
Rady Children's Hospital - San Diego Rady Children's Hospital-San Diego is the region’s pediatric medical...
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40 Sunshine Cottage Road
Valhalla, New York 10595
(914) 594-4000
Principal Investigator: Jessica C. Hochberg
Phone: 914-594-3794
New York Medical College The College was founded in 1860 by a group of New...
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1600 Rockland Road
Wilmington, Delaware 19803
(302) 651-4200
Principal Investigator: Ramamoorthy Nagasubramanian
Phone: 302-651-6884
Alfred I. duPont Hospital for Children Nemours began more than 70 years ago with the...
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Akron, Ohio 44308
Principal Investigator: Steven J. Kuerbitz
Phone: 330-543-3193
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Albany, New York 12208
Principal Investigator: Kenneth G. Lucas
Phone: 518-262-5513
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Allentown, Pennsylvania 18103
Principal Investigator: Lydia A. Boateng
Phone: 734-712-3671
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1540 East Hospital Drive
Ann Arbor, Michigan 48109
(877) 475-6688
Principal Investigator: Rajen Mody
Phone: 800-865-1125
C S Mott Children's Hospital Behind the doors of C.S. Mott Children's Hospital there exist...
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Asheville, North Carolina 28801
Principal Investigator: Douglas J. Scothorn
Phone: 828-213-4150
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13123 E 16th Ave
Aurora, Colorado 80045
(720) 777-1234
Principal Investigator: Kelly W. Maloney
Phone: 720-777-6672
Children's Hospital Colorado At Children's Hospital Colorado, we see more, treat more and heal more...
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2401 W Belvedere Ave
Baltimore, Maryland 21215
(410) 601-9000
Principal Investigator: Jason M. Fixler
Phone: 410-601-6120
Sinai Hospital of Baltimore Sinai Hospital of Baltimore provides a broad array of high-quality, cost-effective...
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401 North Broadway
Baltimore, Maryland 21287
410-955-5000
Principal Investigator: Kenneth J. Cohen
Phone: 410-955-8804
Johns Hopkins University-Sidney Kimmel Cancer Center The name Johns Hopkins has become synonymous with excellence...
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8901 Rockville Pike
Bethesda, Maryland 20889
(301) 295-4000
Principal Investigator: Kenneth Lieuw
Phone: 301-319-2100
Walter Reed National Military Medical Center The Walter Reed National Military Medical Center is one...
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100 E Idaho St
Boise, Idaho 83712
(208) 381-2711
Principal Investigator: Eugenia Chang
Phone: 800-845-4624
Saint Luke's Mountain States Tumor Institute For more than 100 years, St. Luke
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Boston, Massachusetts 02111
Principal Investigator: Michael J. Kelly
Phone: 617-636-5535
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Bronx, New York 10467
Principal Investigator: Lisa Gennarini
Phone: 718-379-6866
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Chapel Hill, North Carolina 27599
Principal Investigator: Stuart H. Gold
Phone: 877-668-0683
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171 Ashley Avenue
Charleston, South Carolina 29425
843-792-1414
Principal Investigator: Jacqueline M. Kraveka
Phone: 843-792-9321
Medical University of South Carolina The Medical University of South Carolina (MUSC) has grown from...
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3110 MacCorkle Avenue Southeast
Charleston, West Virginia 25304
Principal Investigator: Ashley E. Meyer
Phone: 304-388-9944
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Charlotte, North Carolina 28204
Principal Investigator: Jessica A. Bell
Phone: 704-384-5369
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Charlotte, North Carolina 28204
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Chattanooga, Tennessee 37403
Principal Investigator: Manoo G. Bhakta
Phone: 423-778-7289
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Chicago, Illinois 60614
Principal Investigator: Jennifer L. Reichek
Phone: 773-880-4562
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1200 West Harrison Stree
Chicago, Illinois 60607
(312) 996-4350
Principal Investigator: Mary L. Schmidt
Phone: 312-355-3046
Univ of Illinois A major research university in the heart of one of the world's...
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5841 S Maryland Ave
Chicago, Illinois 60637
1-773-702-6180
Principal Investigator: Tara O. Henderson
Phone: 773-702-8222
University of Chicago Comprehensive Cancer Center The University of Chicago Comprehensive Cancer Center (UCCCC) is...
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2049 E 100th St
Cleveland, Ohio 44106
(216) 444-2200
Principal Investigator: Rabi Hanna
Phone: 866-223-8100
Cleveland Clinic Foundation The Cleveland Clinic (formally known as The Cleveland Clinic Foundation) is a...
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Columbia, Missouri 65201
Principal Investigator: Barbara A. Gruner
Phone: 573-882-7440
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5 Richland Medical Park Dr
Columbia, South Carolina 29203
(803) 434-7000
Principal Investigator: Stuart L. Cramer
Phone: 803-434-3680
Palmetto Health Richland Palmetto Health Richland, originally founded in 1892 as Columbia Hospital, has a...
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Dallas, Texas 75390
Principal Investigator: Patrick J. Leavey
Phone: 214-648-7097
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Dayton, Ohio 45404
Principal Investigator: Ayman A. El-Sheikh
Phone: 937-641-3296
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Denver, Colorado 80218
Principal Investigator: Jennifer J. Clark
Phone: 866-775-6246
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4160 John R St #2122
Detroit, Michigan 48201
(313) 833-1785
Principal Investigator: Jeffrey W. Taub
Phone: 313-576-9790
Wayne State University/Karmanos Cancer Institute Karmanos is based in southeast Michigan, in midtown Detroit, and...
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Detroit, Michigan 48236
Principal Investigator: Adonis N. Lorenzana
Phone: 734-712-3671
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9333 Imperial Highway
Downey, California 90242
Principal Investigator: Robert M. Cooper
Phone: 510-891-3400
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2301 Erwin Rd
Durham, North Carolina 27710
919-684-8111
Principal Investigator: Susan G. Kreissman
Phone: 888-275-3853
Duke Univ Med Ctr As a world-class academic and health care system, Duke Medicine strives...
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801 Broadway North
Fargo, North Dakota 58122
Principal Investigator: Samuel O. Anim
Phone: 800-437-4010
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1600 S Andrews Ave
Fort Lauderdale, Florida 33316
(954) 355-4400
Principal Investigator: Hector M. Rodriguez-Cortes
Phone: 954-355-5346
Broward Health Medical Center Broward Health, providing service for more than 75 years, is a...
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Fort Myers, Florida 33908
Principal Investigator: Emad K. Salman
Phone: 239-343-5333
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801 7th Avenue
Fort Worth, Texas 76104
(682) 885-4000
Principal Investigator: Mary Meaghan P. Granger
Phone: 682-885-2103
Cook Children's Medical Center Cook Children's Health Care System is a not-for-profit, nationally recognized pediatric...
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1600 Southwest Archer Road
Gainesville, Florida 32610
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835 S Van Buren St
Green Bay, Wisconsin 54301
Principal Investigator: Catherine A. Long
Phone: 920-433-8889
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1001 E 5th St
Greenville, North Carolina 27858
(252) 328-6131
Principal Investigator: Andrea R. Whitfield
Phone: 252-744-1015
East Carolina University Whether it's meeting the demand for more teachers and healthcare professionals or...
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900 West Faris Rd.
Greenville, South Carolina 29605
(864)455-8898
Principal Investigator: Nichole L. Bryant
Phone: 864-241-6251
BI-LO Charities Children's Cancer Center The BI-LO Charities Children
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Greenville, South Carolina 29605
Principal Investigator: Nichole L. Bryant
Phone: 864-241-6251
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30 Prospect Ave
Hackensack, New Jersey 07601
(201) 996-2000
Principal Investigator: Michael B. Harris
Phone: 201-996-2879
Hackensack University Medical Center Hackensack University Medical Center, part of the Hackensack University Health Network,...
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Hershey, Pennsylvania 17033
Principal Investigator: Lisa M. McGregor
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Honolulu, Hawaii 96813
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1319 Punahou St
Honolulu, Hawaii 96826
(808) 983-6000
Principal Investigator: Wade T. Kyono
Phone: 808-983-6090
Kapiolani Medical Center for Women and Children Hawai‘i Pacific Health is an integrated health care...
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Houston, Texas 77030
Principal Investigator: ZoAnn E. Dreyer
Phone: 713-798-1354
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Houston, TX
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705 Riley Hospital Dr
Indianapolis, Indiana 46202
(317) 944-5000
Principal Investigator: Kamnesh R. Pradhan
Phone: 800-248-1199
Riley Hospital for Children Riley Hospital for Children at IU Health is a place of...
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Indianapolis, IN
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Indianapolis, Indiana 46260
Principal Investigator: Bassem I. Razzouk
Phone: 317-338-2194
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Indianapolis, IN
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Iowa City, Iowa 52242
Principal Investigator: Mariko Sato
Phone: 800-237-1225
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Iowa City, IA
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Jacksonville, Florida 32207
Principal Investigator: Ramamoorthy Nagasubramanian
Phone: 407-650-7150
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Jacksonville, FL
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Kansas City, Missouri 64108
Principal Investigator: Keith J. August
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Kansas City, MO
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2018 W Clinch Ave
Knoxville, Tennessee 37916
(865) 541-8000
Principal Investigator: Ray C. Pais
Phone: 865-541-8266
East Tennessee Children's Hospital East Tennessee Children's Hospital is a not-for-profit, private, independent pediatric medical...
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Knoxville, TN
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Las Vegas, Nevada 89109
Principal Investigator: Alan K. Ikeda
Phone: 702-384-0013
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Las Vegas, NV
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Las Vegas, Nevada 89144
Principal Investigator: Alan K. Ikeda
Phone: 702-384-0013
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Las Vegas, NV
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Las Vegas, Nevada 89135
Principal Investigator: Alan K. Ikeda
Phone: 702-384-0013
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Las Vegas, NV
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1 Medical Center Dr
Lebanon, New Hampshire 03756
 (603) 650-5000
Principal Investigator: Julie Kim
Phone: 800-639-6918
Dartmouth Hitchcock Medical Center Dartmouth-Hitchcock is a national leader in patient-centered health care and building...
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Lebanon, NH
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Lexington, Kentucky
Principal Investigator: Vlad C. Radulescu
Phone: 859-257-3379
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Lexington, KY
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1 Children's Way
Little Rock, Arkansas 72202
(501) 364-1100
Principal Investigator: David L. Becton
Phone: 501-364-7373
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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11234 Anderson St
Loma Linda, California 92354
(909) 558-4000
Principal Investigator: Albert Kheradpour
Phone: 909-558-3375
Loma Linda University Medical Center An outgrowth of the original Sanitarium on the hill in...
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Loma Linda, CA
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Long Beach, California 90806
Principal Investigator: Pamela H. Kempert
Phone: 562-933-7802
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Long Beach, CA
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