Frequently Asked Questions

 

Low Grade Glioma Registry FAQs

AMIGO advanced imaging suite

  • The Low Grade Glioma Registry asks participants to:

    • complete an online study consent form and questionnaire

    • provide a saliva sample that will permit us to look at changes in DNA

    If you allow, we may also review your tissue specimens and MRI scans of your low grade glioma brain tumor.

    Downloadcopies of the consent forms at the links below:

    Low Grade Glioma Registry consent (PDF)

    OPTIMUM consent (PDF)

  • We hope the information we learn will increase our knowledge of glioma and that this information will lead to better treatments in the future.

  • Anyone diagnosed with a low grade glioma is eligible to enroll in the Low Grade Glioma Registry. A subset of persons in the Registry are eligible for the OPTIMUM study, such as persons with low grade glioma that have had recurrence treated with a second surgery.

  • The Low Grade Glioma Registry is run by Elizabeth B. Claus, PhD, MD, at Yale University School of Public Health (New Haven, CT), and Brigham and Women’s Hospital Department of Neurosurgery (Boston, MA). Dr. Claus is a neurosurgeon and researcher in the United States.

    In addition to Dr. Claus, the OPTIMUM study is co-led by:

    • Bethany M. Kwan, PhD, MSPH, at the University of Colorado School of Medicine

    • Roel Verhaak, PhD, at The Jackson Laboratory

    Learn more about the Low Grade Glioma Registry on the Research Team page.

  • We are happy to answer any questions your medical team has about the Low Grade Glioma Registry. Ask your doctor to contact:

    • Elizabeth B. Claus, PhD, MD

    • glioma@yale.edu

    You can also share a link to this website, and the consent forms at the bottom of this page.

  • There are no costs to participate in these studies if you submit your consent forms through Qualtrics or via email. To submit through Hugo Health, click the Join The Registry button in the upper right corner of this website.

    If you do not wish to submit through our website, you may also download a copy of all consent forms and send them via secure email to: glioma@yale.edu.

    If you wish to participate in these studies by mail you will need to purchase a stamped envelope and send the study materials to:

    Dr. Elizabeth B. Claus, School of Public Health
    Yale University
    60 College Street
    New Haven, CT 06520-8034

    If you are using a mobile device to participate the Registry, please note that transmitting data may count against your existing mobile data plan. You can limit the impact the data collection has on your phone plan by configuring your smart phone to only use WiFi connections, or click Join The Registry from a computer with Internet access.

  • Yes, our research staff can help coordinate your enrollment in the study via telephone and through printed materials.

    Call us at 203.785.6415.

    You may also send us mail at:

    Yale School of Public Health, Biostatistics – Low Grade Glioma Registry, PO Box 208034, 60 College Street,New Haven, CT 06520-8034, United States

  • We welcome your questions! Contact us in any of the following ways.

    Email: glioma@yale.edu

    Phone: 203.785.6415

    Fax: 203.785.6912

    Mail:

    Yale School of Public Health
    Biostatistics – Low Grade Glioma Registry
    PO Box 208034, 60 College Street
    New Haven, CT 06520-8034
    United States

 

Download: Study consent forms

Low Grade Glioma Registry consent form
OPTIMUM consent form

Join the Registry

 

It starts with you

Join more than 400 individuals around the world already enrolled in the Low Grade Glioma Registry.

Enroll Now