Join A Brain Tumor Registry
for Low Grade Glioma
The Registry is an international community of over 600 people with a history of low grade glioma (LGG) who contribute their health data for research on:
Why some people develop brain tumors
How inherited tumor genes are related to LGG diagnoses
What role genetics and the environment play in glioma risk factors and responses to treatment
How best to treat people with low grade gliomas
The Registry is a collective effort led by a team of doctors and researchers from several US research universities, people diagnosed with LGG, care partners, and a global community of LGG advocates. The Registry is unique because it focuses on people initially diagnosed with low grade glioma brain tumors (grade 2 or 3) – rather than high grade gliomas, such as glioblastoma, which may be studied more often.
The Registry enables research using patient data to answer questions about LGG. Together we hope to create a better future for people with LGG by discovering more personalized forms of treatment.
You can join the Registry if:
You have ever been diagnosed with a grade 2 or 3 glioma (such as astrocytoma or oligodendroglioma)
Are currently between 21–79 years old
When you join the Registry you will be asked to
Confidentially share your health information
Complete an online survey
Provide a blood or saliva sample
You can join the registry today by completing a simple sign-up process. Together, we can support people with LGG by using cutting-edge research.
What are Low Grade Glioma Registry participants asked to do?
Participation in the Low Grade Glioma Registry involves 3 steps:
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First, we ask your permission to use Hugo health (https://hugo.health/)—our technology platform—to collect data from you.
You can access the Hugo platform on a computer, your mobile phone, or other devices that connect to the Internet.
Hugo is able to collect data from multiple sources, including your hospital medical record, pharmacy, and “wearable” health technology (such as an AppleWatch or Fitbit), and then store this information in your secure account.
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Second, we ask you to complete an online questionnaire. The questionnaire takes about 30 minutes to complete, and asks for information about your glioma treatment and other aspects of your medical history.
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Finally, the third part of the study asks you to provide a saliva sample and give us permission to look at changes in your DNA. If you allow, we may also review your brain tissue specimens.
For additional details about participating in this study, download a copy of the Low Grade Glioma Registry consent form.