The Watchdog of Brain Tumor Data

The Watchdog of Brain Tumor Data

Data are everything in the world of brain tumors. There’s no one more instrumental in that world than Carol Kruchko, President and CMO of the Central Brain Tumor Registry of the United States (CBTRUS).

Through her and her team’s dedication and dogged determination, researchers and medical professionals today have accurate, reliable, standardized data as they try to solve the complicated puzzle of brain tumors. That same data have contributed to documenting longer survival rates as patients have received improved and new treatment options.  Just 30 years ago, that was not the case.

Like many in this field, Kruchko came at it from a very personal vantage point. In 1988, her three-year-old son died of a medulloblastoma. “The American Brain Tumor Association (ABTA) had provided our family with information that was very helpful as we worked to find the best treatment. When I asked what I could do to help patients and their families, ABTA came up with a project that ultimately led to the founding of CBTRUS over 26 years ago.”

The thought of helping patients directly was not something she could do so soon after her son’s death, but she liked the idea of assisting researchers as she had done in the engineering library at the University of Notre Dame when a student at nearby St. Mary’s College. At that time, there was no nationwide collection of statistics regarding incidence and survival rates on all brain tumors – including nonmalignant tumors.

“So, I took it on,” she said, noting it was a fortuitous time when patient advocacy in areas like breast cancer and AIDS were coming to the forefront at about the same period as technological advances were impacting science.

Kruchko made relationships, seized opportunities, talked to everyone she could and kept reading journals and learning as much as possible about the field.  Eventually professionals were hired to assist in efforts to legitimize their work, which went on to become the largest aggregation of population-based data on primary and other tumors in the United States.

“The CBTRUS gives us the power to make sure data are as accurate and complete as the clinician community needs to reflect what is going on in their practices,” she says. “We are not a patient advocacy group, we are the watchdog of data. That is the role we took on.”

And with that role comes responsibility, something Kruchko takes extremely seriously and has from the beginning. Early on, she was focused on supporting legislation to include mandatory reporting of nonmalignant tumors to help better understand and study the disease and its cost to society. That legislation was passed in 2002 in the form of Public Law 107-269.

Other accomplishments of the CBTRUS include the Oxford University Press publishing of the CBTRUS Statistical Report: Primary Brain and Other Central Nervous System Tumors and having that report become a supplement to the Society for Neuro-Oncology journal, Neuro-Oncology, the leading journal in the field. That is a far cry from the days when Kruchko’s husband, a printer, helped her publish the report, which at times was spread out on their dining room table.

The American Brain Tumor Association now supports the CBTRUS report on the status of brain tumors in adolescents and young people, and a third publication supported by the Alex’s Lemonade Stand Foundation concentrates on tumors in infants and young children.

Most non-profits face funding issues and the CBTRUS has not been immune to that. Kruchko and others faced obstacles in the beginning to obtain grant money to do the work they wanted to do. While a five-year, $1,000,000 grant from the CDC appeared to be a godsend, funding was drastically lowered during sequestration budget cuts.

The organization survived and began receiving other public and private funding as time went on including a contract from the Center for Disease Control & Prevention, and grants from Novocure, AbbVie, and the American Brain Tumor Association.

While these accomplishments are impressive, Kruchko is most appreciative of “the giving spirit” of the many collaborators: researchers, donors, volunteer board members, neuro-oncologists, epidemiologists, associations and foundation members, patients, cancer registrars, and  so many others who have made the CBTRUS possible. And she’s looking forward to the exciting work being done in gene mapping and biomarker discovery that hopefully will result in personalized data being used to treat patients.

“There are so many stories about wonderful people who opened the door a crack for CBTRUS, and I was able to put my foot in.”

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