"Launch of the Low Grade Glioma Registry at this year's conference is among the exceptional opportunities for patients and families living with a brain tumor diagnosis to learn from and engage with the experts leading game-changing research and delivering the latest treatment options available," said Elizabeth Wilson, American Brain Tumor Association president and CEO.
Data collected from 2,000 low grade glioma (LGG) patients will be used in a study to determine inherited and non-inherited genetic variants associated with LGG, response to treatment and clinical outcomes for these patients as well as their needs regarding information on their tumor and its treatment.
According to Dr. Claus, the patient registry is an important first step to advance our understanding and guide development of targeted therapies for this tumor type.
"The internet and associated secure web-based research tools allow researchers to study subjects with greater ease" she said. "Web-based collaborations with patient organizations like the ABTA allow researchers to leverage internet tools to connect more easily with rare patient cohorts."
Voluntary on-site participation in the registry is open to low grade glioma conference attendees, 21 years and older, complete an online questionnaire, provide a saliva sample and their pathology report.
ABTA Annual Patient & Family Conference
Westin O'Hare | Chicago, Ill.
Friday, July 29:
Elizabeth B. Claus, MD, PhD, Brigham and Women's Hospital and the Yale School of Public Health
1:35 – 1:50 p.m.: "Engaging Patients in Research: The International Glow Grade Glioma Registry"
5 – 6 p.m.: "Launch of the International Low Grade Glioma Registry Enrollment"
Ken Aldape, MD, University of Toronto, presents how the recent World Health Organization (WHO) re-classification of brain tumors will impact the diagnosis and treatment of brain tumors, including low grade gliomas.
1:05 – 1:20 p.m.: "The WHO Re-Classification of Brain Tumors"
Jill Barnholtz-Sloan, PhD, Case Comprehensive Cancer Center, discusses how a low grade glioma brain tumor affects young adults (ages 15-39) differently
3:15 – 3:30 p.m.: "New Insights into Adolescent & Young Adult (AYA) Brain Tumors"
Saturday, July 30, Breakout Session:
10-11 a.m.: "Low Grade Tumors and Meningiomas"
Precision Medicine and its Impact on Brain Tumors: Low Grade, High Grade and Metastatic is being held at the Westin O'Hare in Chicago, July 29-30. To register for the conference, go to www.braintumorconference.org, call 800-886-ABTA (2282) or email email@example.com. Advance registration is encouraged through July 22; limited onsite registration is available. Discounted hotel rooms are available until Monday, July 18.
About the American Brain Tumor Association
Founded in 1973, the American Brain Tumor Association was the first and is the only national patient advocacy organization committed to funding brain tumor research and providing support and education programs for all tumor types for all ages.
For more information, visit www.abta.org.
CONTACT: Martha Carlos
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SOURCE American Brain Tumor Association