Last updated on August 2020

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


Brief description of study

This clinical trial keeps track of and collects follow-up information from patients who are currently enrolled on or have participated in a Children's Oncology Group study. Developing a way to keep track of patients who have participated in Children's Oncology Group studies may allow doctors learn more about the long-term effects of cancer treatment and help them reduce problems related to treatment and improve patient quality of life.

Detailed Study Description

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 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.

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 number.

Clinical Study Identifier: NCT00736749

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Saint Mary's Hospital

West Palm Beach, FL United States
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Mount Sinai Hospital

New York, NY United States
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Florida Hospital Orlando

Orlando, FL United States
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Saint Peter's University Hospital

New Brunswick, NJ United States
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Kaiser Permanente-Oakland

Oakland, CA United States
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Sinai Hospital of Baltimore

Baltimore, MD United States
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Riley Hospital for Children

Indianapolis, IN United States
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Ochsner Medical Center Jefferson

New Orleans, LA United States
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Mattel Children's Hospital UCLA

Los Angeles, CA United States
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Cleveland Clinic Foundation

Cleveland, OH United States
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Children's Hospital of Alabama

Birmingham, AL United States
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Arkansas Children's Hospital

Little Rock, AR United States
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Children's Hospital Los Angeles

Los Angeles, CA United States
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Yale University

New Haven, CT United States
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Miami Cancer Institute

Miami, FL United States
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Nemours Children's Hospital

Orlando, FL United States
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Johns Hopkins All Children's Hospital

Saint Petersburg, FL United States
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Blank Children's Hospital

Des Moines, IA United States
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Children's Hospital New Orleans

New Orleans, LA United States
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C S Mott Children's Hospital

Ann Arbor, MI United States
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Columbia Regional

Columbia, MO United States
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East Carolina University

Greenville, NC United States
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Driscoll Children's Hospital

Corpus Christi, TX United States
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Cook Children's Medical Center

Fort Worth, TX United States
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Primary Children's Hospital

Salt Lake City, UT United States
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Seattle Children's Hospital

Seattle, WA United States
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Recruitment Status: Open


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