Enrollment on the Childhood Cancer Research Network (CCRN) of the Children's Oncology Group

Protocol for the Enrollment on the Official COG Registry, The Childhood Cancer Research Network (CCRN)

The Children's Oncology Group has established a research network, the Childhood Cancer Research Network (CCRN), to collect information about children with cancer and other conditions that are benign but involve abnormal cell growth in order to help doctors and scientists better understand childhood cancer. The CCRN's goal is to collect clinical information about every child diagnosed with cancer and similar conditions in the United States and Canada, to allow researchers to study patterns, characteristics, and causes of childhood cancer. The information can also help researchers study the causes of childhood cancer. To expand the CCRN, parents of children who have been diagnosed with cancer will be asked to provide information about themselves and their child for research purposes.

OBJECTIVES:

I. To obtain informed consent from parents of infants, children, adolescents, and young adults newly diagnosed with cancer (and their child when appropriate) to enter their names and certain information concerning their child into the Childhood Cancer Research Network and/or for permission to be contacted in the future to consider participating in future studies.

II. For children under the age of majority at the time of parental consent: Once the child reaches the age of majority, to obtain informed consent from that child to allow her/his name and other identifying information to continue to be available to the Childhood Cancer Research Network and/or to be possibly contacted in the future to consider participating in other studies.

OUTLINE:

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.

• All patients, diagnosed with a primary malignancy since the date the initial IRB approval was received for this study 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.
• Myeloproliferative disease
• Langerhans Cell histiocytosis
• Patients with a secondary malignancy may be eligible provided they also meet the criteria in the above. These patients need to be enrolled using their primary diagnosis.
• Participants 0 through 21 years of age are eligible; irrespective of eligibility for other COG studies.
• Participant must be resident of the United States, Canada or Mexico.