LGG Registry Eligibility
Who can join the Low Grade Glioma Registry?
You are eligible to enroll in the Low Grade Glioma Registry if you:
Are currently aged 21-79 years, regardless of the age that you were diagnosed with a low grade glioma (WHO grade 2 or 3)
Have ever been diagnosed with a grade 2 or 3 glioma
People who have had two or more surgeries are eligible to enroll in an additional study within the Registry called OPTIMUM.
Terms used to classify low grade glioma have changed over the last decade, and may include:
Oligodendroglioma
Astrocytoma
Oligo-Astrocytoma (or Mixed Glioma)
Low Grade Glioma
Glioma, not otherwise specified
Study Eligibility for the Low Grade Glioma Registry
After you enroll in the Low Grade Glioma Registry, we review your pathology report to confirm whether you are eligible for the study.
The Low Grade Glioma Registry places no restrictions on sex, gender, race, date of diagnosis, place of residence, or current glioma status.
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.
Study Eligibility for OPTIMUM for persons with recurrent Low Grade Glioma
After you enroll in the Low Grade Glioma Registry, we review your pathology report to confirm whether you are eligible for the OPTIMUM study.
A subset of persons in the Registry are eligible for OPTIMUM, i.e., such as those with low grade glioma that have had recurrence treated with a second surgery.
The OPTIMUM study places no restrictions on sex, gender, race, date of diagnosis, place of residence, or current glioma status.
However, OPTIMUM is currently limited to people who receive their care within the United States.
What are OPTIMUM participants asked to do?
Participation in OPTIMUM includes an alternative 3rd step detailed below.
In OPTIMUM, we examine whether variations in inherited tumor genes are associated with glioma and with response to treatment.
Rather than providing a saliva sample, as described above, OPTIMUM requires providing a blood sample for additional genetic testing. 🩸
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To examine inherited genes, we will ask you to donate one blood sample for whole exome and whole genome sequencing for this research. We will draw 40 ml (about eight teaspoons) of blood for analysis. The blood draw should take about 15-30 minutes.
To examine tumor genes, we will retrieve stored tissue specimens from all of your glioma surgeries.
Note that only excess tissue will be obtained from the pathology department. We will ask if you wish to have us share our findings from any of your genetic analyses with you and/or your healthcare provider.
Note: If you enroll in OPTIMUM you are automatically enrolled in the Low Grade Glioma Registry. No extra consent forms are required.