Long-Term Follow-Up of Patients Who Have Participated in Children's Oncology Group Studies
Recruitment status was Recruiting
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.
Brain and Central Nervous System Tumors
Chronic Myeloproliferative Disorders
Long-term Effects Secondary to Cancer Therapy in Children
Multiple Myeloma and Plasma Cell Neoplasm
Unspecified Childhood Solid Tumor, Protocol Specific
Other: survey administration
Procedure: assessment of therapy complications
Procedure: long-term screening
Procedure: study of high risk factors
|Official Title:||Umbrella Long-Term Follow-Up Protocol|
- 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 ]
|Study Start Date:||May 2007|
|Estimated Primary Completion Date:||February 2008 (Final data collection date for primary outcome measure)|
- 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.
Show 113 Study Locations
|Study Chair:||Smita Bhatia, MD, MPH||Beckman Research Institute|
|Investigator:||Dennis Deapen, DrPH||USC/Norris Comprehensive Cancer Center|