Large cohort of ‘pure’ low grade glioma patients needed to identify tumor and genetic variations, response to treatment and clinical outcomes.
The American Brain Tumor Association (ABTA) is the respected leader in the brain tumor community for its programs and services that encourage and empower patients and families to take an active role in their medical treatment and health care. The progress in brain tumor research in recent years has led the ABTA to also embrace greater patient engagement in scientific efforts that will increase the understanding of brain tumors and accelerate the development of new therapies to improve outcomes for the community overall.
Last year, the ABTA provided initial funding for an international low grade glioma patient registry under the direction of Elizabeth B. Claus, MD, PhD, Brigham and Women’s Hospital and Yale University School of Public Health. Dr. Claus will present her experience with patient registries, the need for a low grade glioma registry, use of its data, and the enrollment criteria and process for patients wishing to participate in the registry during the opening session of the ABTA’s Annual Patient and Family Conference Precision Medicine & its Impact on Brain Tumors: Low Grade, High Grade & Metastatic on July 29-30 in Chicago.
“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.
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 firstname.lastname@example.org. 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.
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