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 ]
  

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.