The International Low Grade Glioma Registry

By 21st July 2016 October 3rd, 2016 Brain Tumour Magazine 2016/17

This article was first published in the 2016/17 edition of Brain Tumour, the IBTA's annual magazine that is distributed globally and free of charge in 113 countries and at international neuro-oncology and cancer conferences around the world. Read the full issue online and find out more here. Dr Elizabeth B Claus is Professor and Director of Medical Research, Yale University; Attending Neurosurgeon and Director of Stereotactic Radiosurgery, Brigham and Women’s Hospital Boston, United States.

THE study of relatively rare diseases such as glioma remains a significant scientific challenge.

Professor Elizabeth Claus

Professor Elizabeth Claus

Traditionally researchers identify the large numbers of participants required for such studies through use of population-based or hospital-based tumor registries. Each registry includes only a small number of potential study subjects making the study prohibitively costly, labor-intensive and potentially unavailable to persons from regions or countries without registries.

The good news is that the development of secure web and smartphone-based research tools along with collaboration with patient organizations such as the International Brain Tumor Alliance (IBTA) allows scientists to identify, enroll, collect data from, and share results and information with patients with greater ease. Researchers benefit from direct contact with a highly engaged group of potential study subjects, while patients and caregivers benefit from access to scientific and clinical expertise and from the opportunity to voice their interest and concerns regarding research undertakings.

The “International Low Grade Glioma Registry” represents one such web-based research effort.

The overall goal for this registry is to gather data for the study of adult patients with low grade glioma (LGG) as well as to provide an international forum for dissemination of information on the topic.

“The management of these patients remains one of the most controversial topics in neuro-oncology,” says Dr. Elizabeth B. Claus, the principal investigator for the registry.

She added: “The information needs and life concerns of LGG patients include those noted for high grade glioma patients (such as overall prognosis, how to gain information on treatment, and how to interpret genetic results with respect to the patient’s own risk as well as that of any family members). LGG patients’ needs also include many that differ given the significantly younger age at diagnosis and long survival time.”

Picture this: a smartphone app for low grade glioma is under development. It will collect and track common symptoms of glioma treatment including fatigue, cognitive difficulties, sleep disturbances, mood changes and reduction in physical activity.

Picture this: a smartphone app for low grade glioma is under development. It will collect and track common symptoms of glioma treatment including fatigue, cognitive difficulties, sleep disturbances, mood changes and reduction in physical activity.

Access to this information is difficult for many patients, particularly those who receive care outside of centers that specialize in neuro-oncology. Access may also be difficult for healthcare workers who care for a wide range of oncology patients.

“The construction of a web-based LGG information site will provide healthcare providers, patients, and caregivers with a more accessible and standardized information resource,” said Dr. Claus who is Professor and Director of Medical Research at the Yale University School of Public Health and Attending Neurosurgeon and Director of Stereotactic Radiosurgery in the Department of Neurosurgery at Brigham and Women’s Hospital in Boston, USA.

Dr Claus has worked extensively in cancer epidemiology and is currently developing cost- and time-efficient web- and smartphone-based recruitment strategies to be used in the study of brain tumors. She has recently received pilot funding from the American Brain Tumor Association (ABTA) and the National Brain Tumor Society (NBTS) to commence development of the registry.

Traditionally, gliomas have been classified by the World Health Organization (WHO) as grade I to IV (1 – 4). Adult grade II tumors (low grade gliomas or LGG) have included astrocytomas, oligo-astrocytomas (mixed gliomas) and oligodendrogliomas.

Researchers recently developed a new molecular genetic method to reclassify such gliomas based on three glioma tumor alterations: TERT promoter mutation, IDH mutation and co-deletion of 1p and 19q. This classification method generated five glioma subgroups: triple-positive (containing all three alterations), IDH mutant only, IDH and TERT mutant, triple negative and TERT mutant only.

Each group has unique clinical features (such as specific ages at diagnosis) as well as specific additional tumor and germline (inherited) genetic alterations.

“Insufficient data exist for LGG across these different subtypes and hence the need to undertake a focused study of LGG to better guide patients,” said Dr. Claus. “Genetic information can lead to a better understanding of glioma risk as well as improved selection of treatment for glioma patients. In this study we plan to look at inherited genetic changes to determine whether there is any relationship between such changes and glioma risk. In addition, we wish to study genetic and molecular characteristics of glioma tumors to determine whether we can better predict patients’ response to treatment.”

As part of this registry, patients will be asked to provide a copy of their pathology report to confirm their diagnosis. A saliva sample (by mail) as well as a tumor specimen sample will then be requested so that associations between genetic and molecular markers and LGG risk as well as outcomes may be studied.

In addition to learning more about the genetics of glioma, the study hopes to better understand the symptoms associated with treatment. A smartphone app is under development and will use surveys and phone sensor data 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 while others will be invited to participate in a physical exercise program. The information gathered from these efforts will be used to learn what can be done to improve symptoms reported by low grade glioma patients.


The study is expected to open in late summer 2016. An introductory video on the study is available here. Interested patients and caregivers may contact Dr. Claus at  for further information.

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