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

  • Resize font
  • Print
  • Email
  • Facebook
  • Twitter
  • Google+
  • Pinterest

Basic Trial Information

PhaseTypeStatusAgeSponsorProtocol IDs
No phase specifiedNatural history/EpidemiologyActive30 and underNCI, OtherALTE05N1
NCI-2009-00382, CDR0000590123, U10CA180886, U10CA098543, COG-ALTE05N1, NCT00736749

Trial Description


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.

Further Study Information


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 COG Late Effects Committee, the SDC, and the member institutions.

VI. To collect cumulative therapeutic exposure data (via therapeutic summaries completed online by treating institutions) on patients completing active therapy.

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.

Eligibility Criteria

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
  • COG-AHOD0031
  • Brain tumor
  • CCG-A9961
  • Acute lymphoblastic leukemia
  • COG-ALTE02C2
  • Neuroblastoma
  • COG-A3973
  • Rhabdomyosarcoma
  • IRS-IV-Stage 1
  • IRS-IV-Stage 2/3
  • IRS-IV-Stage/Group 4
  • 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 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

Trial Contact Information

Trial Lead Organizations/Sponsors

Children's Oncology Group

  • National Cancer Institute
Smita Bhatia, Principal Investigator

Trial Sites



Children's Hospital of Alabama at University of Alabama at Birmingham

Smita Bhatia
Ph: 800-826-4673
Email: becomingapatient@coh.org


Phoenix Children's Hospital

Jessica Boklan
Ph: 602-546-0920

Little Rock

Arkansas Children's Hospital at the University of Arkansas for Medical Sciences

David L Becton
Ph: 501-364-7373


Southern California Permanente Medical Group

Robert M Cooper
Ph: 626-564-3455


City of Hope Comprehensive Cancer Center

Smita Bhatia

Loma Linda

Loma Linda University Cancer Institute at Loma Linda University Medical Center

Antranik A Bedros
Ph: 909-558-3375

Long Beach

Jonathan Jaques Children's Cancer Center at Miller Children's Hospital

Theodore Zwerdling
Ph: 562-933-5600

Los Angeles

Children's Hospital Los Angeles

Leo Mascarenhas
Ph: 323-361-4110

Jonsson Comprehensive Cancer Center at UCLA

Pamela H Kempert
Ph: 310-825-6708

Mattel Children's Hospital at UCLA

Jacqueline N Casillas
Ph: 310-825-6708

Samuel Oschin Comprehensive Cancer Institute at Cedars-Sinai Medical Center

Fataneh (Fae) Majlessipour
Ph: 310-423-8965


Children's Hospital Central California

Vonda L Crouse
Ph: 866-353-5437


Kaiser Permanente-Oakland

Steven K Bergstrom
Ph: 626-564-3455


Children's Hospital of Orange County

Violet Shen
Ph: 714-997-3000

Palo Alto

Lucile Packard Children's Hospital at Stanford University Medical Center

Neyssa M Marina
Ph: 650-498-7061
Email: clinicaltrials@med.stanford.edu


University of California Davis Cancer Center

Jay Michael S Balagtas
Ph: 916-734-3089

San Diego

Rady Children's Hospital - San Diego

William D Roberts
Ph: 858-966-5934

San Francisco

UCSF Helen Diller Family Comprehensive Cancer Center

Robert E Goldsby
Ph: 877-827-3222


Children's Hospital Colorado Center for Cancer and Blood Disorders

Kelly W Maloney
Ph: 720-777-6672


Presbyterian - St. Luke's Medical Center

Jennifer J Clark
Ph: 866-775-6246


Connecticut Children's Medical Center

Michael S Isakoff
Ph: 860-545-9981

New Haven

Yale Cancer Center

Nina S Kadan-Lottick
Ph: 203-785-5702


Alfred I. duPont Hospital for Children

Ramamoorthy Nagasubramanian
Ph: 407-650-7150

District of Columbia

Children's National Medical Center

Jeffrey S Dome
Ph: 202-884-2549

Lombardi Comprehensive Cancer Center at Georgetown University Medical Center

Aziza T Shad
Ph: 202-444-0381

Fort Lauderdale

Broward General Medical Center Cancer Center

Hector M Rodriguez-Cortes
Ph: 954-355-5346

Fort Myers

Children's Hospital of Southwest Florida

Emad K Salman
Ph: 239-343-5333


UF Health Cancer Center

William B Slayton
Ph: 352-273-8675
Email: trials@cancer.ufl.edu


Nemours Children's Clinic

Ramamoorthy Nagasubramanian
Ph: 407-650-7150


Baptist-South Miami Regional Cancer Program

Doured Daghistani
Ph: 800-599-2456
Email: cancerinfo@baptisthealth.net


Arnold Palmer Hospital for Children

Vincent F Giusti
Ph: 321-841-7246
Email: CancerClinicalTrials@orlandohealth.com

Florida Hospital Cancer Institute at Florida Hospital Orlando

Fouad M Hajjar
Ph: 407-303-5623

Nemours Children's Hospital

Ramamoorthy Nagasubramanian
Ph: 407-650-7150


Nemours Children's Clinic - Pensacola

Ramamoorthy Nagasubramanian
Ph: 407-650-7150

Saint Petersburg

All Children's Hospital

Gregory A Hale
Ph: 727-767-2423
Email: HamblinF@allkids.org


St. Joseph's Children's Hospital of Tampa

Erin M Cockrell
Ph: 800-882-4123

West Palm Beach

Kaplan Cancer Center at St. Mary's Medical Center

Narayana Gowda
Ph: 888-823-5923
Email: ctsucontact@westat.com


Kapiolani Medical Center for Women and Children

Robert W Wilkinson
Ph: 808-983-6090


Mountain States Tumor Institute at St. Luke's Regional Medical Center

Eugenia Chang
Ph: 800-845-4624


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

Jennifer L Reichek
Ph: 773-880-4562

University of Illinois Cancer Center

Mary L Schmidt
Ph: 312-355-3046


Cardinal Bernardin Cancer Center at Loyola University Medical Center

Eugene Suh
Ph: 708-226-4357

Oak Lawn

Keyser Family Cancer Center at Advocate Hope Children's Hospital

Rebecca E McFall
Ph: 847-723-7570


Saint Jude Midwest Affiliate

Karen S Fernandez
Ph: 309-655-3258


Simmons Cooper Cancer Institute

Gregory P Brandt
Ph: 217-545-7929


Riley's Children Cancer Center at Riley Hospital for Children

Robert J Fallon
Ph: 888-823-5923
Email: ctsucontact@westat.com

St. Vincent Indianapolis Hospital

Bassem I Razzouk
Ph: 317-338-2194

Des Moines

Blank Children's Hospital

Wendy L Woods-Swafford
Ph: 515-241-6729

Iowa City

Holden Comprehensive Cancer Center at University of Iowa

Ayman A El-Sheikh
Ph: 800-237-1225


University of Kentucky Chandler Medical Center

Lars M Wagner
Ph: 859-257-3379


Kosair Children's Hospital

Kenneth G Lucas
Ph: 866-530-5516

New Orleans

Children's Hospital of New Orleans

Lolie C Yu
Ph: 504-894-5377

Ochsner Cancer Institute at Ochsner Clinic Foundation

Craig Lotterman
Ph: 888-562-4763


Alvin and Lois Lapidus Cancer Institute at Sinai Hospital

Joseph M Wiley
Ph: 410-601-6120
Email: pridgely@lifebridgehealth.org

Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins

Kenneth J Cohen
Ph: 410-955-8804
Email: jhcccro@jhmi.edu


National Naval Medical Center

Anne B Warwick
Ph: 301-319-2100


Floating Hospital for Children at Tufts - New England Medical Center

Michael J Kelly
Ph: 617-636-5000
Email: ContactUsCancerCenter@TuftsMedicalCenter.org

Ann Arbor

C.S. Mott Children's Hospital at University of Michigan Medical Center

Rajen Mody
Ph: 800-865-1125


Van Elslander Cancer Center at St. John Hospital and Medical Center

Hadi Sawaf
Ph: 313-343-3166

Wayne State University

Jeffrey W Taub
Ph: 313-576-9363

Grand Rapids

Helen DeVos Children's Hospital at Spectrum Health

David S Dickens
Ph: 616-267-1925


Children's Hospitals and Clinics of Minnesota - Minneapolis

Bruce C Bostrom
Ph: 612-813-5193

Masonic Cancer Center at University of Minnesota

Joseph P Neglia
Ph: 612-624-2620


Mayo Clinic Cancer Center

Carola A. S. Arndt
Ph: 507-538-7623


University of Mississippi Cancer Clinic

Gail C Megason
Ph: 601-815-6700


Columbia Regional Hospital

Thomas W Loew
Ph: 573-882-7440

Saint Louis

David C. Pratt Cancer Center at St. John's Mercy

Bethany G. Sleckman
Ph: 913-948-5588

Siteman Cancer Center at Barnes-Jewish Hospital - Saint Louis

Robert J Hayashi
Ph: 800-600-3606
Email: info@siteman.wustl.edu

Las Vegas

CCOP - Nevada Cancer Research Foundation

Nik Farahana N Rashid
Ph: 702-384-0013

Children's Specialty Center of Nevada

Nik Farahana N Rashid
Ph: 702-384-0013

New Hampshire

Norris Cotton Cancer Center at Dartmouth-Hitchcock Medical Center

Sara Chaffee
Ph: 800-639-6918
Email: cancer.research.nurse@dartmouth.edu

New Jersey

Hackensack University Medical Center Cancer Center

Michael B Harris
Ph: 201-996-2879


Carol G. Simon Cancer Center at Morristown Memorial Hospital

Steven L Halpern
Ph: 973-971-5900

New Brunswick

Cancer Institute of New Jersey at UMDNJ - Robert Wood Johnson Medical School

Richard A Drachtman
Ph: 732-235-8675

Saint Peter's University Hospital

Stanley Calderwood
Ph: 732-745-8600ext6163
Email: kcovert@saintpetersuh.com


St. Joseph's Hospital and Medical Center

Mary A Bonilla
Ph: 973-754-2909


Overlook Hospital

Steven L Halpern
Ph: 973-971-5900

New Mexico

University of New Mexico Cancer Center

Koh B Boayue
Ph: 505-272-6972

Smita Bhatia

New York

Albany Medical Center Hospital

Vikramjit S Kanwar
Ph: 518-262-3368


Montefiore Medical Center

Peter D Cole
Ph: 718-904-2730
Email: aecc@aecom.yu.edu


Winthrop University Hospital

Mark E Weinblatt
Ph: 866-946-8476

New York

Herbert Irving Comprehensive Cancer Center at Columbia University Medical Center

Alice Lee
Ph: 212-305-8615

Mount Sinai Medical Center

Birte Wistinghausen
Ph: 212-824-7320
Email: jenny.figueroa@mssm.edu


James P. Wilmot Cancer Center at University of Rochester Medical Center

Lisa R Hackney
Ph: 585-275-5830

Stony Brook

Stony Brook University Cancer Center

Robert I Parker
Ph: 800-862-2215


SUNY Upstate Medical University Hospital

Karol H Kerr
Ph: 315-464-5476


New York Medical College

Jessica C Hochberg
Ph: 914-594-3794

North Carolina

Mission Hospitals - Memorial Campus

Douglas J Scothorn
Ph: 828-213-4150

Chapel Hill

Lineberger Comprehensive Cancer Center at University of North Carolina - Chapel Hill

Stuart H Gold
Ph: 877-668-0683
Email: cancerclinicaltrials@med.unc.edu


Leo W. Jenkins Cancer Center at ECU Medical School

George E Hucks
Ph: 252-744-2391


Wake Forest University Comprehensive Cancer Center

Thomas W McLean
Ph: 336-713-6771

North Dakota

Roger Maris Cancer Center at MeritCare Hospital

Samuel O Anim
Ph: 701-234-6161


Akron Children's Hospital

Steven J Kuerbitz
Ph: 330-543-3193


Cincinnati Children's Hospital Medical Center

John P Perentesis
Ph: 513-636-2799


Cleveland Clinic Taussig Cancer Center

Margaret C Thompson
Ph: 866-223-8100

Seidman Cancer Center at University Hospitals/Case Medical Center

Yousif (Joe) H Matloub
Ph: 216-844-5437


Nationwide Children's Hospital

Mark A Ranalli
Ph: 614-722-2708


Dayton Children's - Dayton

Emmett H Broxson
Ph: 800-228-4055


Mercy Children's Hospital

Rama Jasty
Ph: 419-251-8210

Toledo Hospital

Jamie L Dargart
Ph: 419-824-1842

Oklahoma City

Stephenson Cancer Center at the University of Oklahoma

Rene Y McNall-Knapp
Ph: 405-271-4272
Email: julie-traylor@ouhsc.edu


Natalie Warren Bryant Cancer Center at St. Francis Hospital

Gregory B Kirkpatrick
Ph: 918-494-2200


Lehigh Valley Hospital - Muhlenberg

Philip M Monteleone
Ph: 484-884-2201


Penn State Children's Hospital

Lisa M McGregor
Ph: 717-531-6012


Children's Hospital of Philadelphia

Jill P Ginsberg
Ph: 215-590-2810


Children's Hospital of Pittsburgh of UPMC

Arthur K Ritchey
Ph: 412-692-5573

San Juan

San Jorge Children's Hospital

Luis A Clavell
Ph: 888-823-5923
Email: ctsucontact@westat.com

Rhode Island

Rhode Island Hospital Comprehensive Cancer Center

Jennifer J Greene Welch
Ph: 401-444-1488

South Carolina

Hollings Cancer Center at Medical University of South Carolina

Jacqueline M Kraveka
Ph: 843-792-9321


Palmetto Health South Carolina Cancer Center

Ronnie W. Neuberg
Ph: 803-434-3680


BI-LO Charities Children's Cancer Center

Nichole L Bryant
Ph: 864-241-6251

Cancer Centers of the Carolinas - Faris Road

Nichole L Bryant
Ph: 864-241-6251

South Dakota
Sioux Falls

Sanford Cancer Center at Sanford USD Medical Center

Kayelyn J Wagner
Ph: 605-328-1367


St. Jude Children's Research Hospital

Wayne L Furman
Ph: 866-278-5833
Email: info@stjude.org


Vanderbilt-Ingram Cancer Center

Howard M Katzenstein
Ph: 800-811-8480


Dell Children's Medical Center of Central Texas

Amy C Fowler
Ph: 214-648-7097

Corpus Christi

Driscoll Children's Hospital

M. C Johnson
Ph: 361-694-5311


Medical City Dallas Hospital

Carl Lenarsky
Ph: 972-566-5588

Simmons Comprehensive Cancer Center at University of Texas Southwestern Medical Center - Dallas

Patrick J Leavey
Ph: 214-648-7097

Fort Worth

Cook Children's Medical Center - Fort Worth

Mary Meaghan P Granger
Ph: 682-885-2103


Dan L. Duncan Cancer Center at Baylor College of Medicine

ZoAnn E Dreyer
Ph: 713-798-1354
Email: burton@bcm.edu

San Antonio

Children's Hospital of San Antonio

Timothy C Griffin
Ph: 713-798-1354
Email: burton@bcm.edu

University of Texas Health Science Center at San Antonio

Anne-Marie R Langevin
Ph: 210-450-3800
Email: CTO@uthscsa.edu

Salt Lake City

Primary Children's Medical Center

Phillip E Barnette
Ph: 801-585-5270


University of Vermont Cancer Center

Alan C Homans
Ph: 802-656-4101

Falls Church

Inova Fairfax Hospital

Marshall A Schorin
Ph: 703-208-6650


Children's Hospital of The King's Daughters

Eric J Lowe
Ph: 757-668-7243


Naval Medical Center - Portsmouth

Bethany M Mikles
Ph: 757-953-5939


Virginia Commonwealth University Massey Cancer Center

Madhu S Gowda
Ph: 804-628-1939


Children's Hospital and Regional Medical Center - Seattle

Douglas S Hawkins
Ph: 866-987-2000


Providence Cancer Center at Sacred Heart Medical Center

Judy L Felgenhauer
Ph: 800-228-6618
Email: HopeBeginsHere@providence.org


Mary Bridge Children's Hospital and Health Center - Tacoma

Robert G Irwin
Ph: 253-403-3229

West Virginia

West Virginia University Medical School - Charleston

Howard M Grodman
Ph: 304-388-9944

Green Bay

St. Vincent Hospital Regional Cancer Center

John R Hill
Ph: 920-433-8889


University of Wisconsin Paul P. Carbone Comprehensive Cancer Center

Kenneth B DeSantes
Ph: 608-262-5223


Marshfield Clinic - Marshfield Center

Michael J McManus
Ph: 715-389-4457


Midwest Children's Cancer Center at Children's Hospital of Wisconsin

Michael E Kelly
Ph: 414-805-4380

See All Trial Sites

Link to the current ClinicalTrials.gov record.
NLM Identifier NCT00736749
ClinicalTrials.gov processed this data on April 09, 2015

Note: Information about this trial is from the ClinicalTrials.gov database. The versions designated for health professionals and patients contain the same text. Minor changes may be made to the ClinicalTrials.gov record to standardize the names of study sponsors, sites, and contacts. Cancer.gov only lists sites that are recruiting patients for active trials, whereas ClinicalTrials.gov lists all sites for all trials. Questions and comments regarding the presented information should be directed to ClinicalTrials.gov.