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


Accelerated Phase Chronic Myelogenous Leukemia | Acute Myeloid Leukemia/Transient Myeloproliferative Disorder | Acute Undifferentiated Leukemia | Angioimmunoblastic T-cell Lymphoma | Atypical Chronic Myeloid Leukemia, BCR-ABL1 Negative | Blastic Phase Chronic Myelogenous Leukemia | Childhood Acute Lymphoblastic Leukemia in Remission | Childhood Acute Myeloid Leukemia in Remission | Childhood Burkitt Lymphoma | Childhood Chronic Myelogenous Leukemia | Childhood Diffuse Large Cell Lymphoma | Childhood Grade III Lymphomatoid Granulomatosis | Childhood Immunoblastic Large Cell Lymphoma | Childhood Myelodysplastic Syndromes | Childhood Nasal Type Extranodal NK/T-cell Lymphoma | Chronic Eosinophilic Leukemia | Chronic Myelomonocytic Leukemia | Chronic Neutrophilic Leukemia | Chronic Phase Chronic Myelogenous Leukemia | Cutaneous B-cell Non-Hodgkin Lymphoma | Essential Thrombocythemia | Extramedullary Plasmacytoma | Intraocular Lymphoma | Isolated Plasmacytoma of Bone | Juvenile Myelomonocytic Leukemia | Long-term Effects Secondary to Cancer Therapy in Children | Mast Cell Leukemia | Meningeal Chronic Myelogenous Leukemia | Monoclonal Gammopathy of Undetermined Significance | Myelodysplastic/Myeloproliferative Neoplasm, Unclassifiable | Polycythemia Vera | Post-transplant Lymphoproliferative Disorder | Primary Central Nervous System Hodgkin Lymphoma | Primary Central Nervous System Non-Hodgkin Lymphoma | Primary Myelofibrosis | Primary Systemic Amyloidosis | Progressive Hairy Cell Leukemia, Initial Treatment | Prolymphocytic Leukemia | Secondary Acute Myeloid Leukemia | Secondary Myelodysplastic Syndromes | Stage 0 Chronic Lymphocytic Leukemia | Stage I Childhood Anaplastic Large Cell Lymphoma | Stage I Childhood Hodgkin Lymphoma | Stage I Childhood Large Cell Lymphoma | Stage I Childhood Lymphoblastic Lymphoma | Stage I Childhood Small Noncleaved Cell Lymphoma | Stage I Chronic Lymphocytic Leukemia | Stage I Cutaneous T-cell Non-Hodgkin Lymphoma | Stage I Multiple Myeloma | Stage I Mycosis Fungoides/Sezary Syndrome | Stage II Childhood Anaplastic Large Cell Lymphoma | Stage II Childhood Hodgkin Lymphoma | Stage II Childhood Large Cell Lymphoma | Stage II Childhood Lymphoblastic Lymphoma | Stage II Childhood Small Noncleaved Cell Lymphoma | Stage II Chronic Lymphocytic Leukemia | Stage II Cutaneous T-cell Non-Hodgkin Lymphoma | Stage II Multiple Myeloma | Stage II Mycosis Fungoides/Sezary Syndrome | Stage III Childhood Anaplastic Large Cell Lymphoma | Stage III Childhood Hodgkin Lymphoma | Stage III Childhood Large Cell Lymphoma | Stage III Childhood Lymphoblastic Lymphoma | Stage III Childhood Small Noncleaved Cell Lymphoma | Stage III Chronic Lymphocytic Leukemia | Stage III Cutaneous T-cell Non-Hodgkin Lymphoma | Stage III Multiple Myeloma | Stage III Mycosis Fungoides/Sezary Syndrome | Stage IV Childhood Anaplastic Large Cell Lymphoma | Stage IV Childhood Hodgkin Lymphoma | Stage IV Childhood Large Cell Lymphoma | Stage IV Childhood Lymphoblastic Lymphoma | Stage IV Childhood Small Noncleaved Cell Lymphoma | Stage IV Chronic Lymphocytic Leukemia | Stage IV Cutaneous T-cell Non-Hodgkin Lymphoma | Stage IV Mycosis Fungoides/Sezary Syndrome | T-cell Large Granular Lymphocyte Leukemia | Unspecified Childhood Solid Tumor, Protocol Specific | Untreated Childhood Acute Lymphoblastic Leukemia | Untreated Childhood Acute Myeloid Leukemia and Other Myeloid Malignancies | Untreated Hairy Cell Leukemia | Waldenström Macroglobulinemia

Trial Phase


Trial Purpose and Description

Trial Purpose

This clinical trial is studying long-term follow-up in patients who are or have participated in Children's Oncology Group studies. Developing a way to track patients enrolled in Children's Oncology Group studies will help doctors gather long-term follow-up information and may help the study of cancer in the future.

Trial Description


I. To develop a mechanism for tracking and retaining patients enrolled on 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.

Participation Guidelines

N/A - N/A

Eligibility Criteria

Inclusion Criteria:

- Must be newly diagnosed with a primary malignancy and enrolled on a front line COG
therapeutic trial for treatment of a primary malignancy OR must have been enrolled on
a COG (or Legacy Group) therapeutic or non-therapeutic trial calling for long-term
follow-up, including any of the following:

- Hodgkin lymphoma

- CCG-5942

- POG-9425

- POG-9426

- COG-AHOD0031

- Brain tumor

- CCG-A9961

- Acute lymphoblastic leukemia


- Neuroblastoma

- COG-A3973

- Rhabdomyosarcoma


- IRS-IV-Stage 1

- IRS-IV-Stage 2/3

- IRS-IV-Stage/Group 4

- Must reside in the U.S. during trial enrollment
Children's Oncology Group
National Cancer Institute (NCI)
May 2008
Last Updated:
August 5, 2014
Study HIC#:

Clinicaltrials.gov ID: NCT00736749