PRIMARY OBJECTIVES:
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 quality of life and 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
LTFC Oversight Committee, the SDC, and the member institutions.
OUTLINE: This is an umbrella protocol for all long-term follow-up at COG institutions.
Within 3 months of enrollment on ALTE05N1, patients receive a packet introducing the
Long-Term Follow-Up Center (LTFC). Patients are asked to complete a patient response form,
verify information provided in packet, and update contact and health status information. 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 may
respond by use of postage prepaid envelopes, secure online form, or 24-hour toll-free
telephone number. After initial contact, the LTFC will contact the patient annually.
