Protocol for the Enrollment on the Official COG Registry, The Childhood Cancer Research Network (CCRN) Children's Oncology Group
- Institutional membership in the Children's Oncology Group (COG) requires registration
of all pediatric cancer patients seen at their site. This registration process includes
- 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.
- 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.
- 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.
- Pre-CCRN Entry
- All new patients seen in COG member institutions with any of the following diagnoses
-- 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
If consent to enter the patient in ACCRN07 is obtained:
1. Using the patient's COG ID, the CCRN consent will be added to their record and the
patient will be considered registered with COG.
2. Depending on the response on the consent form, the record will be flagged for a yes'
or no' to possible contact for future studies in the CCRN.
If consent is not obtained to enter the patient in ACCRN07
1. For those parents/patients who refuse the CCRN consent, they will still be able to be
enrolled on any COG clinical trial (therapeutic and non- therapeutic) for which the
patient is eligible. The unique COG ID will be used to identify the patient.
2. The information collected as part of the study entry procedures will not be available
to the CCRN. The record will be flagged as refusing participation in the CCRN.
3. If consent is later obtained for enrollment in the CCRN, the patient must be entered in
ACCRN07 using the patient's unique COG ID.
Time Perspective: Prospective
Crystal L Mackall, M.D.
National Cancer Institute (NCI)
United States: Federal Government
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