at San Francisco, California and other locations
study started



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.

Official Title

Umbrella Long-Term Follow-Up Protocol



  1. 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.

  1. 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.


Acute Lymphoblastic Leukemia Brain Neoplasm Hodgkin Lymphoma Rhabdomyosarcoma Precursor Cell Lymphoblastic Leukemia-Lymphoma Leukemia, Lymphoid Hodgkin Disease Brain Neoplasms


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
  • POG-9404
  • Rhabdomyosarcoma
  • 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 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


  • UCSF Medical Center-Parnassus withdrawn
    San Francisco, California, 94143, United States
  • UCSF Medical Center-Mission Bay accepting new patients
    San Francisco, California, 94158, United States
  • Kaiser Permanente-Oakland accepting new patients
    Oakland, California, 94611, United States
  • Children's Hospital Central California accepting new patients
    Madera, California, 93636-8762, United States
  • Lucile Packard Children's Hospital Stanford University accepting new patients
    Palo Alto, California, 94304, United States
  • University of California Davis Comprehensive Cancer Center accepting new patients
    Sacramento, California, 95817, United States
  • Children's Hospital Los Angeles accepting new patients
    Los Angeles, California, 90027, United States
  • David Geffen School of Medicine at UCLA accepting new patients
    Los Angeles, California, 90095, United States
  • Mattel Children's Hospital UCLA accepting new patients
    Los Angeles, California, 90095, United States
  • Cedars-Sinai Medical Center accepting new patients
    Los Angeles, California, 90048, United States
  • City of Hope Comprehensive Cancer Center accepting new patients
    Duarte, California, 91010, United States
  • Southern California Permanente Medical Group accepting new patients
    Downey, California, 90242, United States
  • Miller Children's and Women's Hospital Long Beach accepting new patients
    Long Beach, California, 90806, United States
  • Children's Hospital of Orange County accepting new patients
    Orange, California, 92868, United States
  • Loma Linda University Medical Center accepting new patients
    Loma Linda, California, 92354, United States
  • Nevada Cancer Research Foundation CCOP accepting new patients
    Las Vegas, Nevada, 89106, United States
  • Children's Specialty Center of Nevada II accepting new patients
    Las Vegas, Nevada, 89109, United States
  • Sunrise Hospital and Medical Center accepting new patients
    Las Vegas, Nevada, 89109, United States


accepting new patients
Start Date
Children's Oncology Group
Study Type
Last Updated
October 19, 2017