The International Low Grade Glioma Registry

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One of the most critical questions in the field of neuro-oncology today is how to best manage and treat low-grade glioma (LGG), a malignant tumor of the brain. Dr. Elizabeth B. Claus, professor and director of Medical Research, Yale School of Public Health and attending neurosurgeon and director of Stereotactic Radiosurgery, Brigham and Women’s Hospital has focused her research and clinical practice on this malignant tumor.


In an effort to close this knowledge gap, the International Low-Grade Glioma Registry has been launched. The purpose of this registry is to discover why some people develop LGG while other people do not.  The goal is also to learn more about the effect of this diagnosis and the associated treatments on daily life including the ability to work, drive, sleep, exercise, or take care of oneself and/or family.


Initial funding for the patient registry was funded in part by the American Brain Tumor Association.


What is a low grade glioma?

A low grade glioma (LGG) is a slow growing tumor of the brain.

 

What is the goal of the study?

The purpose of this study is to discover why some people develop LGG while other people do not. We also hope to learn more about the effect of this diagnosis and the associated treatments on daily life including the ability to work, drive, sleep, exercise, or take care of oneself and/or family.


Who is organizing the study?

The study is organized by Dr. Elizabeth B. Claus (Yale University School of Public Health and Brigham and Women’s Hospital Department of Neurosurgery)

 

Who can enter the study?

Any person over the age of 20 years with an initial diagnosis of LGG. Postmortem tissue samples and pathology reports may also be eligible for inclusion in the study. 

Please inquire at glioma@yale.edu for more information.

 

What are study participants asked to do?

The study asks participants to 1) provide a pathology report, 2) complete an online questionnaire and 3) provide a saliva sample that will permit us to look at changes in DNA.

If you allow, we will also review your tissue specimens and MRI scans of your LGG. Some participants will be asked to contribute activity data and perform neurocognitive tasks via their smartphone. You may access the questionnaire and consent at The International Low Grade Glioma Study or by scanning the barcode at the bottom of the page.

 

May I contact the study to get more information?

Please use one of the methods below for more information about the study.