A formidable weapon in the war on cancer has been tumor registries. Housing data from hospitals and pathology labs, these registries provide researchers with information on incidence and demographics, the increase or decrease of certain types of cancer, and profiles of groups at risk. They have been valuable tools in planning for diagnostic and treatment capabilities, and in developing a greater understanding of etiologies. But they are due for an upgrade.

Research conducted by Faith G. Davis, PhD, professor and director of the Epidemiology and Biostatistics Division at the School of Public Health, reveals that registries could serve as an even more powerful resource by fine-tuning the type of data collected.

"While rapid progress is being made in understanding the biology of brain tumors, the epidemiological contribution of defining the impact these advances have on human populations is lagging," says Davis. "I believe that, together, the neuroscience and cancer registry communities can develop a system that will advance both the clinical and etiologic understanding of this disease and lead to future prevention strategies."

In the past, registries chose not to collect data on benign brain tumors, some of which have a similar prognosis to those that are malignant. The registry information was not coded in a way compatible with clinical practice to identify tumor types, which differ dramatically relative to survival. And there was no clinically relevant standard—strict and clear criteria—in the grouping of tumors.

Through her work as research director of the Central Brain Tumor Registry of the United States (CBTRUS), along with the collaboration of twelve state cancer registries, Davis has demonstrated the feasibility of providing a clinically meaningful collection of brain tumor data. It is a model for registries throughout the country that have not yet upgraded.

But the vision has grown. In an article published this year in the Journal of Neuro-Oncology, Davis outlines the need for further registry enhancements; universal and standard reporting of information on all primary brain tumors; collecting data from outpatient clinics and death certificates, in addition to hospitals; gathering information on treatment and recurrence; and quantifying the impact of a brain tumor, by its location, on survival and quality of life.

Through these changes in data collection, health care providers and patient support groups could provide more meaningful patient education. Patients could make more informed decisions. The health care sector could have more complete information when planning for treatment or diagnostic facilities. And researchers would gain a better understanding of the pattern of occurrence and use this knowledge to study etiology.

"Through the newly formed Society for Neuro-Oncology, we have a forum for registry people to interact with clinicians and researchers. We have a dialogue now. And Dr. Davis is the epidemiologist for their journal," says Carol Kruchko, president of CBTRUS. "If she can persuade registries to collect the expanded data, there will be new things learned and new contributions made. It will be our biggest legacy."

Contributed by Marian Lawler