CCRN - Considering Registration

After your child’s diagnosis at a COG institution, you and your child will be approached by staff to consider registration in the CCRN. You will be given materials to look over that describe the CCRN and address questions you may have about participating in it. Your healthcare team is available to answer any questions that you may have. You will also be given a consent form that explains different ways that you and your child can participate in the CCRN. Full participation in the CCRN is voluntary.

There are two (2) parts of registration to consider:

If you agree to be part of the CCRN, you will be asked to provide permission to have the following information sent from your child’s hospital:

• Child’s name
• The name of the person giving consent
• Child’s birth date
• Whether your child is male or female
• The race and ethnicity of the child
• Type and characteristics of the child’s cancer
• Date the cancer was diagnosed
• Children’s Oncology Group institution where the child is being treated

Second, you will be asked if you are willing to be contacted in the future to consider participating in CCRN research studies that may involve you and/or your child. This consent would allow you and your child’s name, home address, and telephone number to be entered in the CCRN. You will only be contacted by researchers whose research studies have undergone scientific review and were found to be important.
If you are not interested in having you and your child included in the CCRN, you may refuse consent.
 

CCRN - Changes to Your Approval Status

If at any time you or your child chooses to change or remove information shared in the CCRN, you may call the CCRN staff, at (626) 241-1760, and the information in the CCRN will be changed in a timely manner.

When your child reaches the age of 18, he or she will be contacted and asked to continue their participation in the CCRN. At the age of 18, information contained in the CCRN will be made unavailable to researchers if

• We cannot make contact with your child to obtain consent or,
• Your child refuses to continue to participate in the CCRN,

Please note: If your child does not consent to be a part of the CCRN at age 18, your consent to be contacted, as a parent or guardian, will still be honored.

CCRN - Risks of Participation

One risk to participating in the CCRN is the release of personal health information, including health records. The CCRN will protect your child’s records so that all information is kept private. The chance of this information being given to someone outside of the CCRN staff and approved researchers is very small.

Another possible risk is that being contacted for future studies may bring up painful feelings or memories about your child’s treatment. It is important to remember that if you are contacted to participate in a study, you are under no obligation to participate Participation in all CCRN studies is entirely voluntary.

The Childhood Cancer Research Network Pilot Study: Testing the CCRN

Between March 2002 and December 2006, the Childhood Cancer Research Network (CCRN) registry was tested at 23 COG institutions. As of December 31, 2006, the families of 2,224 patients were asked to consider participation in the CCRN.

This pie chart shows the decisions of these 2,224 families. Their decisions are broken down into 3 groups:

• 2,127 families (96%) Agreed to be in the CCRN registry and agreed to be contacted by COG in the future.
• 70 families (3%) Agreed to enter personal identifiers in the CCRN registry but did not agree to be contacted by COG in the future.
• 27 families (1%) Refused to register personal identifiers in the CCRN registry and did not agree to be contacted by COG in the future.

The pilot study was a success and all COG institutions began to use the CCRN registry on January 10, 2007.

What is the Children's Cancer Research Network?

First piloted in 2001, the Children's Cancer Research Network (CCRN) is a North American pediatric cancer research registry that has been established by the Children’s Oncology Group for all COG member institutions in the United States and Canada.

Through an informed consentprocess, the initiative enables researchers to follow the health of patients into adulthood using a unique, confidential, non-transferable CCRN identifier. In this way, parents and children contribute to science by adding to the overall knowledge of the causes of cancer, and, through the study of late effects of treatments, help researchers develop improved therapies that have will fewer side effects. COG will also be able to document the contributions and accomplishments of cancer survivors as they become productive adults as well as cancer survivors. COG will be able to evaluate new biologic and epidemiologic information on this large cohort of patients.

How Does CCRN Work?

At the time of initial diagnosis, parents (and children old enough to understand) have three options for participation:

• Not to participate in the CCRN;
• To register with CCRN, but to decline future contact to participate in future research;
• To register with CCRN and agree to future contact with researchers participating in COG-sanctioned nonclinical studies.

The level of participation can be changed at any time, at the request of parents (or the patient, if over age of majority). All patients will be re-consented at the age of majority.

Why is the CCRN Important?

Thanks to more than 50 years of research conducted by the Children’s Oncology Group and its legacy groups, there are more than a quarter of a million childhood cancer survivors now living in the United States. Cure rates for childhood cancer have risen from less than 10 percent in the 1950s to nearly 80 percent today. Survivors of cancer often face long-term side effects from their treatment and this registry will allow the COG to continue to follow patients into adulthood.

By following this growing population of survivors, and conducting future research, the Children’s Oncology Group will be able to confirm that new therapies being developed in the laboratory are leading to fewer side effects later in life. This has always been one of the primary goals of the Children’s Oncology Group; not only to “cure” but to “cure better.”

This initiative is being led by Julie Ross, Ph.D, Professor and Director of the University of Minnesota’s Division of Pediatric Epidemiology and Clinical Research. Dr. Ross serves as Principal Investigator of the CCRN and Chair of the Epidemiology Committee of the Children’s Oncology Group.

Status Update - 8/21/2013

37,629 patients have enrolled.