CHILDRENS ONCOLOGY GROUP (COG): NEW COOPERATIVE GROUP CREATED TO CURE AND PREVENT CHILDHOOD AND ADOLESCENT CANCER BY VITA LERMAN
CHILDRENS CANCER TRIALS LEAD TO INCREASED SURVIVAL
Advances in pediatric cancer research have been phenomenal. The overall cure rate is now at 75%, and survival rates from some childhood cancers (Hodgkin’s Disease and Wilms’ Tumor) exceed 92%. These recent statistics from the National Cancer Institute (NCI) are extremely encouraging to patients, families and researchers, particularly since less than 10% of children survived their cancer 45 years ago, when the first cooperative clinical trials group for children’s cancer was founded. Increased survival and pediatric cancer clinical trials go hand in hand. Clinical research has been responsible for the discovery of virtually all of the groundbreaking treatments for childhood cancers. Better survival rates also have been linked to participation in pediatric cooperative group clinical trials, which offer the most advanced therapies available for children and adolescents with cancer.
NEW C.O.G. TO FURTHER IMPROVE CURE RATES AND QUALITY OF LIFE
To further improve cure rates, the four pediatric cancer cooperative groups – the Pediatric Oncology Group (POG), the Children’s Cancer Group (CCG), the Intergroup Rhabdomyosarcoma Study Group (IRSG) and the National Wilms’ Tumor Study Group (NWTSG) – decided to join forces and create the new Children’s Oncology Group (C.O.G.). Building on the tremendous progress to date, the new C.O.G. will accelerate the search for successful treatments and continue to improve the quality of life for the growing numbers of childhood cancer survivors.
With unified resources, increased efficiency and more patients on trials, C.O.G. will be able to complete studies faster and make better cancer treatments more readily available. In future research, the new group also intends to conduct more extensive survivor follow-up, to address health care economics, and to create the national childhood cancer registry. The merger of the pediatric groups also will benefit adolescents and young adults with cancer. C.O.G. is strongly committed to ensuring that more adolescents and young adults gain access to clinical trials. So far, this age group has been highly under-
represented on cancer trials, mainly because adolescents and young adults are not usually referred
to the pediatric cancer centers for treatment. And yet, these are precisely the institutions that offer the most appropriate trials for adolescents, since adolescent cancers are more similar to children’s cancers than the types of cancers common in adults. Through a special initiative, C.O.G. plans to increase
adolescent enrollment on C.O.G. trials by making the referring physicians, patients and families more aware of the need and benefits of adolescent participation in clinical studies. C.O.G. also intends to target more treatment studies specifically to the adolescent and young adult population.
HOW WILL THE NEW C.O.G. WORK?
All the pediatric groups, and the newly emerging C.O.G., are NCI-sponsored clinical cooperative groups. In 1955, the NCI formed a clinical studies panel and suggested that the study of leukemia would advance more expeditiously if investigators joined to collaborate on clinical trials through a “cooperative group” mechanism. CCG was formed in 1955 and POG in 1979. The IRSG and NWTSG were formed as intergroup study groups (i.e. composed of POG and CCG member investigators and institutions) in order to more effectively study very rare childhood cancers — rhabdomyosarcoma and Wilms’ tumor. The job of the new childhood cancer cooperative group, C.O.G., will be to develop and coordinate cancer clinical trials conducted at the 238 member institutions, which include cancer centers of all major universities and teaching hospitals throughout the U.S. and Canada, as well as sites in Europe and Australia. The trials at each institution will be centrally monitored and the study results published in peer-reviewed scientific journals. The citations of published studies will be available to patients and families through the new C.O.G. web site, which is currently under development.
C.O.G. PROGRESS AND HOW IT WILL AFFECT PATIENTS
Now, only two years after the merger of the pediatric cooperative groups was conceived, the groups are essentially functioning as a single streamlined organization. On the immediate level, however, the merger will not change anything for patients who are already on POG, CCG, IRSG, or NWTSG studies. These studies will continue as before until completion. The main difference will be felt with the new studies. Starting this July, all patients entering new C.O.G. studies at member institutions will be registered through a web-based remote data entry system, through which patient responses to therapy will be centrally collected and analyzed. This new system will help develop and manage studies more efficiently, which ultimately will lead to faster scientific progress and quicker dissemination of study results.
C.O.G. WILL ADDRESS SURVIVOR ISSUES
The new protocols will reflect crucial survivor issues, such as late effects research, that C.O.G. views as a growing priority. For example, the first C.O.G. Phase III study for high risk neuroblastoma incorporates questions relating to the quality of life of survivors and aims to describe potential late effects that surviving patients may experience. C.O.G. will particularly focus on studying late effects in diseases with high survival rates, such as Hodgkin’s disease. Already a number of studies are testing new treatments for prevention of known side effects, and this trend will continue with the developing C.O.G. studies. In order to track late effects and create safer treatments, long term patient follow-up after completion of therapy is crucial. This requirement is written into each pediatric protocol. However, often patients become lost to follow-up for various reasons – when they change their name or address, for example, or when they transfer to an adult treatment facility.
C.O.G. WELCOMES PATIENT ADVOCATE PARTICIPATION
At its first group meeting in April 2000, the new C.O.G. formally welcomed the participation of patient advocates in all aspects of the clinical trials process. The newly established C.O.G. Patient Advocate
Committee, which consists primarily of parents of children with cancer, will ensure that the needs of patients and families are heard and addressed by the new group. The patient advocate committee contact information will be available on the C.O. G. website. Former patients and their families can help C.O.G. evaluate long term effects of cancer therapies by maintaining current contact information at the treating institution in the years ahead.
Vita Lerman is the Communications Coordinator for the Pediatric Oncology Group and now also for the Children’s Oncology Group. She is the editor of the “Children’s Oncology News,” the C.O.G. quarterly newsletter, and is involved in the creation of the new C.O.G. public web site. Vita has lost family members and a close friend to cancer, and hopes that through increased awareness and access to clinical trials, more patients will become survivors.