WELCOME TO THE INTERNATIONAL LOW GRADE GLIOMA REGISTRY
OVERVIEW OF OUR RESEARCH
WE'VE MOVED: PLEASE SEE OUR NEW WEBSITE:
https://gliomaregistry.org/
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.
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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. Click the sign-up button to access the questionnaire and consent form. You can learn more about our study by exploring the links below.
LEARN MORE ABOUT OUR STUDY
FAQ
What should I know and what do I need to do?
WHAT IS LOW GRADE GLIOMA?
A low grade glioma (LGG) is a slow growing tumor of the brain.
WHAT IS THE GOAL OF THIS 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 THIS 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 THIS STUDY?
Any person over the age of 20 years with an initial diagnosis of LGG (astrocytoma, oligo-astrocytoma or mixed, oligodendroglioma)
WHAT ARE PARTICIPANTS ASKED TO DO?
The study asks participants to:
1) provide a pathology report and study consent form
2) complete an online questionnaire
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.
The consent form and questionnaire can be found here. Consent forms and pathology reports can be uploaded to the linked portal or emailed to glioma@yale.edu.
News
December 2018 Update
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For regular updates, follow us on Twitter @gliomaregistry​ and on our Facebook Page.
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We continue to work towards obtaining larger funds from NIH and others to move towards the genotyping phase of the study.
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We have had a very productive year in terms of glioma research! Some of our recent findings include identifying new genes for LGG as well as identifying sex-specific genes for glioma. We also looked at the influence of obesity related risk factors for glioma. Links for some recent findings are included below.
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​​​Sex-specific glioma genome-wide association study identifies new risk locus at 3p21.31 in females, and finds sex-differences in risk at 8q24.21
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Influence of obesity-related risk factors in the aetiology of glioma
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Genome-wide association study of glioma subtypes identifies specific differences in genetic susceptibility to glioblastoma and non-glioblastoma tumors
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