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International Low-Grade Glioma Patient Registry

Low-grade gliomas (LGG), those classified as Grade II by the World Health Organization, are an understudied group of brain tumors that generally strikes patients in the prime of life. They have a lower average age at diagnosis, but fortunately have a better survival prognosis than high-grade gliomas (those classified as Grades III and IV). While recent research – much funded through the National Brain Tumor Society’s (NBTS) Oligodendroglioma Research Fund – has begun to help the field better understand the molecular underpinnings of these tumors, there is still much to learn, including the effects of low-grade gliomas – and subsequent treatments – on patients’ daily life – such as the ability to work, drive, sleep, exercise, or take care of oneself and/or family – as well as how these tumors develop and progress and why some people develop LGGS while others don’t.

“Survival for this relatively young group of patients has not significantly changed over the past forty years and the optimal means by which these patients should be treated remains a much debated topic in neuro-oncology” says Dr. Elizabeth B. Claus, Professor and Director of Medical Research at the Yale School of Public Health and Attending Neurosurgeon and Director of Stereotactic Radiosurgery in the Department of Neurosurgery at Brigham and Women’s Hospital. “LGG patients’ needs also include many that differ from those for higher grade tumors given the significantly younger age at diagnosis and long survival time.”

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Dr. Elizabeth Claus

Dr. Claus has recently organized the International Low-Grade Glioma Registry – which is being funded in part through NBTS’s Oligodendroglioma Research Fund, in conjunction with the LOGLIO Consortium – to build the first global low-grade glioma adult patient registry using web- and smartphone-based apps to identify, consent and collect clinical/biological/quality of life data for at least 2,000 Grade II glioma patients.

Patient registries are ways to bring data together to be used to understand disease, identify clinical trial participants, and act as a bank of patient health data to provide a “real world” view of clinical practice, safety data, health outcomes, disease progression and effectiveness of clinical treatments.

Dr. Claus and her colleagues’ recent effort to catalogue existing LGG cases reveals only 651 cases with relevant available data. Thus larger numbers of well-annotated cases with clinical, as well as tumor and constitutive materials, are needed for larger analyses of LGG.

“The data collected as part of this registry will help to develop a more informed LGG clinical decision-making process,” says Dr. Claus. “We also hope to begin to respond to the unmet need among LGG patients for management of the associated physical and cognitive symptoms by gathering pilot data on symptoms and general quality of life in patients with LGG. The tools generated will be offered to the NBTS and other brain tumors organizations so that this information will be accessible to patients, caregivers, and healthcare providers throughout the world.”

A smartphone app is under development and will use surveys and phone sensor data and other digital devices, like a Fitbit, to collect and track common symptoms of glioma treatment including fatigue, cognitive difficulties, sleep disturbances, mood changes and reduction in physical activity. Some participants will be asked to keep a health or activity diary and others will be invited to participate in a physical exercise program. Patients will also be asked to provide a copy of their pathology report, a saliva sample (which can be sent by the study to patients by mail), and tumor specimen sample from the patient’s surgeries. This information will help researchers gain new insights into the course of LGGs, how it various between different subtypes of the disease, and better understand and separate the effects of the new treatment from the symptoms of the disease.

The Registry will also help foster collaboration and data-sharing with low-grade glioma researchers around the world, providing a space where they can compare patient outcomes and trends and inform appropriate conception and design for potential successful clinical trials to test promising treatments.

Patients also benefit from participating in registries, as these can provide patients with valuable sources of information on their tumor and allows them to play an active role in a project that will improve the understanding of their disease and potentially inform more precise treatment options for themselves and others. They – along with researchers – will learn new details on overall prognosis, how to gain information on treatments, and how to interpret genetic results for their own risk factors as well as that of any family members.


NBTS is providing pilot funding for Dr. Claus to commence data collection. Persons interested in learning more about the study may contact the registry at glioma@yale.edu.

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