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

• Development of mechanism for tracking and retaining patients enrolled on COG protocols [ Designated as safety issue: No ]
• Maintenance of regular, lifetime contact with patients [ Designated as safety issue: No ]
• Location of targeted patients lost to follow up [ Designated as safety issue: No ]
• Current patient contact information and reported health status updates [ Designated as safety issue: No ]
• Collection of protocol-specific outcome data [ Designated as safety issue: No ]
• Collection of cumulative therapeutic exposure data [ Designated as safety issue: No ]

RATIONALE: 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.

PURPOSE: This clinical trial is studying long-term follow-up in patients who are or have participated in Children's Oncology Group studies.

OBJECTIVES:

• To develop a mechanism for tracking and retaining patients enrolled on COG protocols.
• To maintain regular, lifetime contact with patients in order to obtain current identification and contact information, and self/parent-reported health status.
• 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).
• 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.
• To facilitate collection of protocol-specific outcome data through collaboration with the COG Late Effects Committee, the SDC, and the member institutions.
• 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.

• Brain and Central Nervous System Tumors
• Chronic Myeloproliferative Disorders
• Leukemia
• Long-term Effects Secondary to Cancer Therapy in Children
• Lymphoma
• Lymphoproliferative Disorder
• Multiple Myeloma and Plasma Cell Neoplasm
• Myelodysplastic Syndromes
• Myelodysplastic/Myeloproliferative Neoplasms
• Precancerous Condition
• Unspecified Childhood Solid Tumor, Protocol Specific

• Other: survey administration
• Procedure: assessment of therapy complications
• Procedure: long-term screening
• Procedure: study of high risk factors

DISEASE CHARACTERISTICS:

• Must be newly diagnosed with a primary malignancy and enrolled on a frontline 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

    • COG-ALTE02C2

  • Neuroblastoma

    • COG-A3973

  • Rhabdomyosarcoma

    • IRS-III
    • IRS-IV-Stage 1
    • IRS-IV-Stage 2/3
    • IRS-IV-Stage/Group 4
• Must reside in the U.S. during trial enrollment

PATIENT CHARACTERISTICS:

• Not specified

PRIOR CONCURRENT THERAPY:

• See Disease Characteristics