Join A Brain Tumor Registry

for Low Grade Glioma

 

Participation in the Low Grade Glioma Registry

  • The International Low Grade Glioma Registry is an international community of over 800 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 and 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 Yale University and other U.S. 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 glioma or any grade of IDH-mutant glioma) – rather than high grade gliomas, 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 or any grade of IDH-mutant glioma (such as astrocytoma or oligodendroglioma)

    • Are currently between 21 and 79 years old

  • By contributing your health information, you help:

    • Drive research specific to LGG and IDH-mutant gliomas

    • Improve treatments for current and future patients

    • Ensure people like you are represented in scientific studies

  • When you join the Registry, you will be asked to:

    1. Sign a consent

    2. Provide a copy of your pathology report

    3. Complete an online survey asking about treatment for your glioma and other medical history

    4. Via mail, provide a blood spot or saliva sample

  • You may join by selecting “Join The Registry” at the button below or anywhere on our website.


    Together we can support people with LGG through cutting-edge research.

For additional details about participating in this study, download a copy of the Low Grade Glioma Registry consent form.

You can join the Registry today by completing a simple sign-up process. Together we can support people diagnosed with LGG using cutting-edge research.

Why I Joined the Registry – Liz’s Story

“I joined the Low Grade Glioma Registry because this is the only research effort focused on people like me—those diagnosed with grade 2 and 3 gliomas. It means a lot to know that by sharing my story, I’m helping scientists better understand this disease and improve care for others in the future.

As someone who has been living with a brain tumor for nearly 20 years, I know how rare it is for research to focus on people like us. By contributing our medical history and biosamples, glioma patients can help scientists better understand our disease—not just for us, but for future patients, too

There’s growing interest in what makes low grade glioma unique, and what we learn from our community may even lead to better treatments for people with higher grade tumors. When we participate in this research together, we have power in numbers. This is how we change the game.”
— Liz Salmi, research participant, Low Grade Glioma Registry