- 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.
- 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
- Brain tumor
- Acute lymphoblastic leukemia
- IRS-IV-Stage 1
- IRS-IV-Stage 2/3
- IRS-IV-Stage/Group 4
- Must reside in the U.S. during trial enrollment
- Not specified
PRIOR CONCURRENT THERAPY:
- See Disease Characteristics
Last updated: 04/07/2011