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Brain Tumor Patients Inspire Research Toward Better Treatment

Patients are major motivators for physician-scientist Dr. Elizabeth B. Claus. They and their caregivers share their lives with her, get her up to speed on their favorite Boston sports teams, and, at the same time, ask the important questions that help generate new research ideas.

Dr. Elizabeth Claus

Dr. Claus’s research focuses on cancer and genetic epidemiology, with a specific emphasis on the development of risk prediction models. Early on, her work was in breast cancer, but she turned her focus to tumors of the central nervous system (particularly meningioma and glioma — but also breast cancer that had spread to the brain) when she began her clinical practice in neurosurgery. Her interest in low-grade glioma (LGG) began during a fellowship at Brigham and Women’s Hospital (BWH) in Boston, where she currently practices. During her fellowship, most of her time was spent operating on patients with LGG using the BWH Magnetic Resonance Intraoperative Suite and studying the ability of such technology to improve outcomes for patients with LGG.

As Dr. Claus explains, “The study of rare diseases like brain tumors remains a significant scientific challenge. Traditionally, epidemiologists identify and enroll the large numbers of participants required for such studies through the use of population-based tumor registries or pre-existing medical or research cohorts. For rare diseases, each registry/cohort includes only a small number of potential study subjects, making this study design prohibitively costly, labor-intensive and unavailable to persons from regions without registries.”

This is where NBTS comes in. “The support of NBTS has been invaluable from many points of view,” Dr. Claus says. “We received NBTS funding as part of their Oligodendroglioma — the most common type of LGG — Research Fund that allowed us to move forward with our International Low-Grade Glioma Registry, a web-based effort to perform a focused research project for LGG. We also received administrative and marketing assistance, allowing us to benefit from NBTS’ existing infrastructure to advertise the Registry.”

In addition to connecting Dr. Claus and her research to patients and advocates, NBTS also introduces researchers to one another (including others funded by the Oligodendroglioma Research Fund), allowing them to join forces, reduce costs and pool resources.

“One of the things we are studying in both high- and low-grade glioma, is how germline and tumor genetics vary by sex. Although our analyses are in the early stages, in some instances we are seeing different genetic signatures for males and females, suggesting that both glioma risk and the benefit of certain classes of glioma treatments may vary by sex. The field of neuro-oncology, as well as all of oncology, is rapidly realizing that patients may respond differently to a given treatment based on whether the patient is male or female.”

Use of social media and web-based collaborations with patient organizations like NBTS represent one solution to the above-mentioned problems by allowing researchers to take advantage of currently available internet tools to more effectively conduct research and more easily connect with rare patient cohorts. In this way, researchers benefit from direct contact with a pre-existing and generally highly engaged group of potential study subjects, while patients benefit from direct access to scientific and clinical expertise and from the opportunity to voice their interest and concerns regarding research undertakings. To this end, brain tumor research can become increasingly focused on patients, their needs, and therapies that can work for them. Which means big wins all around — and a more promising future — for our community.


Learn more about the International Low-Grade Glioma Registry. 

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