ACCRN07, Protocol for the Enrollment on the Official COG Registry, The Childhood Cancer Research Network (CCRN)
Once a child is diagnosed with cancer we will: 1) gain authorization from the parents (and agreement from the child, if appropriate) to register each patient with the appropriate type of authorization, (either with or without permission for future contact).
When authorization is obtained:
a) A unique patient identifier will be assigned to patients who agree to have information in the CCRN, even if authorization for future contact is not granted.
b) Depending on the level of permission granted, the record will be flagged for a [Left Quote]yes[Right Quote] or [Left Quote]no[Right Quote] to possible contact for future studies in the CCRN.
c) For a solid tumor diagnosis, at initial enrollment we will transmit a copy of the pathology report confirming the child[Right Quote]s cancer diagnosis to the COG Operations Center to allow for ICD-O coding.
All newly diagnosed patients, not previously registered in COG, seen in member institutions since the date 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
* (carcinoma in situ) or three
- All lesions of the central nervous system regardless of behavior, i.e., benign, borderline or malignant.
- The benign/borderline conditions which will be reportable be agreement shall include:
All teratomas, regardless of locations.
Theca cell x granulosa cell tumor.
Langerhan[Single Quote]s Cell histiocytosis
Registration will occur via the internet through the COG website. Institutional Review Board approval must be obtained for the study. All patients and/or their guardians must provide informed consent.