Enrollment complete
Protocol for the Enrollment on the Official COG Registry, The Childhood Cancer Research Network (CCRN) Children's Oncology Group
NCT No.: NCT01117168
Study Type: OBSERVATIONAL
Phase:
Region: California - Northern
Acronym: CCRN
Official Title
Protocol for the Enrollment on the Official COG Registry, The Childhood Cancer Research Network (CCRN) Children's Oncology Group
Purpose
Institutional membership in the Children s Oncology Group (COG) requires registration of all pediatric cancer patients seen at their site. This registration process includes all patients. In order to maximize the resource that a network would provide, it is necessary to have identifying information on a large proportion of the cases included within the network. Moreover, the resource would be further enhanced if informed consent from parents/patients was obtained to allow future contact regarding possible participation in non-therapeutic and prevention research. The purpose of this study is to obtain informed consent from parents (and the child, when appropriate) of infants, children, adolescents, and young adults newly diagnosed with cancer to enter their names and certain information concerning their child into the Childhood Cancer Research Network. This study is also looking to obtain informed consent from parents (and the child, when appropriate) of infants, children, adolescents, and young adults newly diagnosed with cancer for permission to be contacted in the future to consider participating in non-therapeutic and prevention research studies involving the parents and/or the child.
Detailed Description
In this study parents will provide permission to have personal information sent from their child s hospital to the CCRN, including the child and parents' names; child's gender, birth date, race, and ethnicity; information about the disease; and the treating institution. Parents will also give permission for CCRN to contact the diagnostic laboratory to obtain specific information about the tumor or cancer cells. Parents will be asked if they are willing to be contacted in the future to consider participating in CCRN research studies, and will provide contact information (name, home address, and telephone number) to be entered in the CCRN. Parents or patients who change their minds about having information available in the CCRN can ask the treatment institution to restrict access to the identifying information. Parents or patients who refuse to have information included in the CCRN or be contacted in the future will still be able to enter clinical cancer research studies.
Eligibility Criteria
Inclusion Criteria
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• Pre-CCRN Entry
• All new patients seen in COG member institutions with any of the following diagnoses are eligible:
• All cancer cases with an ICD-O histologic behavior code of two 2
(carcinoma in situ)or three 3 (malignant).
• All lesions of the central nervous system regardless of behavior,
i.e., benign, borderline or malignant.
• The benign/borderline conditions which will be reportable by
agreement shall include: Mesoblastic nephroma, all teratomas,
regardless of locations, Theca cell
• granulosa cell tumor, lymphoproliferative disease,
ganglioneuroma,
• myeloproliferative disease, Langerhan s Cell histiocytosis
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Exclusion Criteria
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Please contact the study team for exclusion criteria.
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Keywords and/or Specific Medical Conditions
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Central Nervous System Diseases
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Central Nervous System Neoplasms
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Children's Oncology Group
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Neoplasms by Histologic Type
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Neoplasms, Connective and Soft Tissue
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Sponsors
- National Cancer Institute/NIH/DHHS
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