INFORMATION SHEET
More about the Childhood Cancer Research Network…
(also see www.curesearch.org for information)
What is the purpose of the Childhood Cancer Research Network?
The Children’s Oncology Group (COG) has established the Childhood Cancer Research Network (CCRN) with the goal of collecting clinical and demographic information about every infant, child, adolescent, and young adult diagnosed with cancer in the United States and Canada. This information will be used to help physicians and scientists better understand whether childhood cancer is increasing and whether there are some children who may be at greater risk for these diseases.
Additionally, the CCRN helps researchers study the causes of specific types of childhood cancers. Because childhood cancers are much less common than adult cancers, nationwide research studies are needed to better understand causes of cancer in children. The CCRN is designed to support these types of nationwide studies.
If I agree to have my and my child’s name and contact information in the CCRN, will my child or I have to participate in future studies?
Agreeing to participate in the CCRN and to allow future contact about research studies does not mean you or your child have to participate in these research studies.
If you are eligible for a CCRN research study that involves contacting you and/or your child, typically you will receive a letter with detailed information about that study and about what would be required of you/your child if you chose to participate. You can then decide whether or not you wish to participate. Some CCRN research studies will not require future contact, an example would be a study of how common a specific diagnosis is, this kind of study would use data already collected in the CCRN.
If you choose not to participate, this will not affect the care or treatment of your child. If you answered “no” to the question about future contact, you will not be contacted about participating in future CCRN studies.
If I refuse to have my child’s information included in the CCRN, will any information on my child be included in the CCRN?
No information about your child will be included in the CCRN if you refuse to have your child’s information included. If you refuse to have your child participate in the CCRN , you will still be able to enter your child on a COG clinical research study. Some of the same information the CCRN is requesting may be needed to take part in another COG study. The information collected about your child for another COG study will not be available to the CCRN researchers, if you refuse to take part in the CCRN.
What are the risks to agreeing to be part of the CCRN?
One risk to you and your child is the release of information from your health records. COG and the CCRN will make every effort within the limits imposed by technology and the law to protect your records so that your name and your child’s name, address, telephone number will be kept private. The Children’s Oncology Group Research Data Center, where this information would be held, is compliant with all U.S. Department Health and Human Services requirements for the maintenance of confidential patient information. The chance that this information will be given to someone else, besides researchers, by mistake is very small.
Since participation in the CCRN does not involve the collection of biological material, you/your child are not at risk for release of genetic information. This risk would only occur if you/your child chose to participate in a future study where such data were collected. In this situation, you would be informed of the risk(s).
While some people feel good about contributing to research that might help other children with cancer, some also experience emotional disturbance when talking about or thinking about their child’s cancer. Should you agree to be contacted about future studies, this contact may bring up painful memories or feelings. Should these feelings occur, we recommend discussing potential problems with clinical personnel or support staff who may be able to assist you in obtaining help.
How will researchers get permission to contact me?
Researchers, who are members of COG, from universities, hospitals, and other health organizations conduct research about cancers in children. CCRN approved research studies are subject to multiple levels of review by COG before being approved to access applicable information in the CCRN registry. COG researchers contact the CCRN about their research proposals for studies that require identifying children diagnosed with a specific type(s) of cancer. The CCRN and COG staff review the way that these studies will be done, and decides if they are important enough and if they have adequate safeguards to protect the families that might choose to participate.
If there was a study that you or your child was eligible for, a CCRN researcher would send you a letter describing the study. A few weeks later, one of the study investigators or the investigator’s staff would contact you by telephone to ask you if you have any questions and whether you would like to participate. Your participation in a study is voluntary. Whether or not you participate will not affect your or your child’s future relations with your physician, the Children’s Oncology Group, or the CCRN. Should you choose to discontinue participation in a study, you may withdraw at any time without prejudice.
How is the CCRN different from regional/state/provincial cancer registries?
Cancer registries collect information about the cancers that are diagnosed within a certain locality or region. By collecting this information, cancer registries are able to report to the public and to health researchers about the numbers of the different types of cancer that occur and how often each type of cancer occurs. Each state has a cancer registry. Hospitals are required by law to provide information to the state cancer registry about all cases of cancer diagnosed and/or treated.
Because hospitals are not required by law to provide identifying information to the CCRN, identifying information such as your child’s name, your name, your address, and your telephone number can only be sent to the CCRN with your permission.
Will everyone in the CCRN asked to participate in research studies?
Research studies about the causes of cancer in children or about specific long term effects of cancer in children are usually designed for specific types of cancer. You may or may not be asked to participate in a research study, and you may be asked to participate in more than one study.
Will I find out the results of research that my child and/or I participate in?
The amount of information that you will receive about the results of research that you and/or your child participate in will be explained to you when you are asked to participate in the study. The overall results of CCRN research studies will be published so that the public and other researchers know what was learned in the studies. No study will publish any information that identifies an individual.
If I choose not to be contacted about future CCRN research studies, does this mean that I will not be asked about participating in any research studies?
Saying that you do not want to be contacted about CCRN research studies means that the CCRN will not provide your name or your child’s name to researchers of CCRN approved studies. You will not be informed about CCRN research studies and you will not be asked to participate in CCRN research studies. There are other types of research studies not related to the CCRN that you/your child may also be eligible for, and you should talk with your doctor about whether you wish to learn more about these studies.
If I chose, how do I withdraw consent to be part of the CCRN?
If, after consenting to be part of the CCRN, you decide to withdraw your consent, you may contact the institution where you/your child was treated at ###-###-####. At that time, access to your child’s and your name and other identifying information (address, telephone number, date of birth, diagnosis date, sex, race, ethnicity, institution) in the CCRN will be restricted. Researchers and staff will no longer have access to your child’s and your name and other identifying information through the CCRN.
If you choose to change or remove your permission to participate in the CCRN, your participation and your child’s participation in the CCRN will be changed as you requested.
What happens once my child reaches the age when she/he is considered an adult (the age of majority)?
Since it is important to allow children to make an informed choice about their participation in the CCRN, if you consent to register your child’s information in the CCRN, once your child reaches the age of majority she/he will be asked if she/he would like to continue to be a part of the CCRN. Your child will be contacted by either the hospital where she/he was treated, or by CCRN Staff, to obtain informed consent to continue to allow her/his name and contact information to be available to the CCRN. If the child refuses, or cannot be found to obtain informed consent, information that could identify the child (name, address, telephone number) will be made unavailable to CCRN researchers.
Your permission to participate in the CCRN as a parent/guardian will be honored into the future, even if your child chooses to opt out of the CCRN when she/he reaches the age of majority.