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

Conditions

Brain and Central Nervous System Tumors | Chronic Myeloproliferative Disorders | Leukemia | Long-term Effects Secondary to Cancer Therapy in Children | Lymphoma | Lymphoproliferative Disorder | Multiple Myeloma and Plasma Cell Neoplasm | Myelodysplastic Syndromes | Myelodysplastic/Myeloproliferative Neoplasms | Precancerous Condition | Unspecified Childhood Solid Tumor, Protocol Specific

Trial Phase

N/A

Trial Purpose and Description

Trial Purpose

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.


Trial Description

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.


Participation Guidelines

Age:
Gender:
Both

Eligibility Criteria


DISEASE CHARACTERISTICS:

- 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

- CCG-5942

- POG-9425

- POG-9426

- COG-AHOD0031

- Brain tumor

- CCG-A9961

- Acute lymphoblastic leukemia

- COG-ALTE02C2

- Neuroblastoma

- COG-A3973

- Rhabdomyosarcoma

- IRS-III

- IRS-IV-Stage 1

- IRS-IV-Stage 2/3

- IRS-IV-Stage/Group 4

- Must reside in the U.S. during trial enrollment

PATIENT CHARACTERISTICS:

- Not specified

PRIOR CONCURRENT THERAPY:

- See Disease Characteristics
Sponsor:
Children's Oncology Group
National Cancer Institute (NCI)
Dates:
May 2007
Last Updated:
April 7, 2011
Study HIC#:
0909005705

Clinicaltrials.gov ID: NCT00736749