Trial Information

Gliogene: Brain Tumor Linkage Study

A consortium (group) of researchers wants to learn more about gliomas as well as the risk
factors (such as environmental and genetic information) for patients with this kind of brain
tumor. Participants in this study will be part of a glioma genetic epidemiology study
(herein referred to as "GLIOGENE") involving eleven centers in the United States (U.S.) and
five centers in Europe. The eleven centers in the U.S. are: The University of Texas M. D.
Anderson Cancer Center (M. D. Anderson); Baylor College of Medicine, Texas Children's
Hospital (TCH); Brigham and Women's Hospital (BWH); Case Western Reserve University (CWRU);
Columbia University Medical Center (CUMD); Duke University (Duke); Mayo Clinic Rochester
(Mayo); Memorial Sloan-Kettering Cancer Center (MSKCC); University of California, San
Francisco (UCSF); University of Illinois, Chicago (UIC); and Evanston Northwest Healthcare
(ENWH). The five centers in Europe are: Gertner Institute, Israel (Gertner); Institute of
Cancer Epidemiology, Denmark (ICE); Institute of Cancer Research (ICR), United Kingdom
(U.K.); Tampere University Hospital (TU) and Umeå University Hospital, Sweden (Umeå).

If you agree to take part in this study, you will have about 3 tablespoons of blood drawn.
If you are unable to donate blood, researchers will collect a saliva sample.

In addition, if you have 2 or more family members with a glioma, a trained research
interviewer will ask you questions using a questionnaire that will take about 30-40 minutes
to complete. The topics in the questionnaire will include demographic data (such as age and
race), environmental exposures, medical history, family history of cancer and other
conditions, and other lifestyle factors.

Study staff will only use any names and contact information of relatives or other potential
research participants provided to M. D. Anderson in order to contact those individuals to
find out if they are eligible and desire to participate in this study.

Before your blood and/or saliva is sent to TCH for banking, your name and any personal
identifying information will be coded to protect your privacy. M. D. Anderson will not have
oversight of any leftover blood and/or saliva that will be banked by THC for additional
research. Blood and saliva that are collected will only be used by researchers involved in
this study.

Neither you nor your physicians will receive individual reports of this research. Results
will not be placed in your health records. All information will be kept confidential and
used only for research purposes. For the results, your sample, contact and medical
information will be linked by assigning an identification number (instead of your name).

In the event that any participant has participated in prior glioma studies conducted by
Melissa L. Bondy (ID00-098 or ID 91-036), signing the informed consent for this study will
allow us to use their specimens previously collected.

There is a rare chance that a research team member could be accidentally exposed to your
blood or body fluids. If that occurs, extra blood (about 2 teaspoons) may be drawn to test
for infections such as hepatitis and HIV (the AIDS virus). An existing blood sample may be
used for these tests instead. You will be told that your blood is being tested and the
results of your test. Researchers will ask how you would like to receive the results, such
as by phone or certified letter. The test results and your name, address, date of birth,
and sex will be recorded in the confidential M. D. Anderson medical records.

If you test positive for hepatitis or HIV, the test results and your name, address, date of
birth, and sex will be shared with appropriate health authorities as required by law. You
will also be given a list of places in your area so that you can receive further testing and
treatment.

Your participation will be over in this study after the data has been collected and
finalized.

This is an investigational study. Up to 17,080 participants will take part in this
multicenter study. Up to 9,000 will be enrolled at M.D. Anderson.