Summary
This research trial collects informed consent to register younger patients with newly diagnosed cancer into the Childhood Cancer Research Network. The Children’s Oncology Group resource provides the basis to build a childhood cancer network to facilitate research. 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 could be further enhanced if informed consent from parents/patients was obtained to allow future contact regarding possible participation in non-therapeutic and prevention research. Collecting informed consents from parents of children with cancer to register with the Childhood Cancer Research Network may help the study of cancer in the future.
Objectives
PRIMARY 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, including: their name, postal/zip code, social security number (SSN) or Canadian social insurance number (SIN), date of birth, diagnosis, diagnosis date, institution, race, ethnicity, and sex into the Childhood Cancer Research Network.
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.
III. To obtain informed consent from parents of infants, children, adolescents, and young adults newly diagnosed with cancer (and the child when appropriate) for permission to be possibly contacted in the future to consider participating in non-therapeutic and prevention research studies involving the parents and/or the child.
IV. For children under the age of majority at the time of parental consent for future contact: once the child reaches the age of majority, to obtain informed consent for permission to be possibly contacted in the future to consider participating in non-therapeutic and prevention research studies.
OUTLINE:
Consent is obtained from parents (or legal guardians and pediatric patients, where applicable) to register their names and certain identifiable information concerning their child, including name, postal/zip code, social security number, date of birth, diagnosis, diagnosis date, institution, race, ethnicity, and sex into the Childhood Cancer Research Network (CCRN), to authorize release of the pathology report to the CCRN, and to permit future contact concerning possible non-therapeutic research studies involving the parents and/or child. Parents and/or patients may also consent to release information into the CCRN without permission for future contact.
Information provided will be held in strict confidence.