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The IBTA

A global web-based registry for rare pediatric brain tumours

CLINICIANS have long been challenged by the treatment of malignant childhood brain tumours. Many of these diseases are only seen three to four times a year even in the busiest of brain tumour centres in the world which deal with over one hundred children with brain tumours annually.

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An overview of Immunotherapy for Brain Cancer

HISTORICALLY, three pillars have served as established approaches for the treatment of cancer, including surgery, radiation therapy and chemotherapy. Based on exciting results achieved over the past few years, immunotherapy is now established as a fourth pillar of cancer therapy.

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The International Low Grade Glioma Registry

This article was first published in the 2016/17 edition of Brain Tumour, the IBTA's annual magazine that is distributed globally and free of charge in 113 countries and at international neuro-oncology and cancer conferences around the world. Read the full issue online and find out more here. Dr Elizabeth B Claus is Professor and Director of Medical Research, Yale University; Attending Neurosurgeon and Director of Stereotactic Radiosurgery, Brigham and Women’s Hospital Boston, United States.

THE study of relatively rare diseases such as glioma remains a significant scientific challenge.

Professor Elizabeth Claus

Professor Elizabeth Claus

Traditionally researchers identify the large numbers of participants required for such studies through use of population-based or hospital-based tumor registries. Each registry includes only a small number of potential study subjects making the study prohibitively costly, labor-intensive and potentially unavailable to persons from regions or countries without registries.

The good news is that the development of secure web and smartphone-based research tools along with collaboration with patient organizations such as the International Brain Tumor Alliance (IBTA) allows scientists to identify, enroll, collect data from, and share results and information with patients with greater ease. Researchers benefit from direct contact with a highly engaged group of potential study subjects, while patients and caregivers benefit from access to scientific and clinical expertise and from the opportunity to voice their interest and concerns regarding research undertakings.

The “International Low Grade Glioma Registry” represents one such web-based research effort. Read More

An interview with David Arons, Chief Executive at the National Brain Tumor Society, United States

This interview with David Arons was first published in the 2016/17 edition of Brain Tumour, the IBTA's annual magazine that is distributed globally and free of charge in 113 countries and at international neuro-oncology and cancer conferences around the world. Read the full issue online and find out more here.

David Arons has worked at the National Brain Tumor Society since 2011 and in July 2015 was appointed as its Chief Executive. A trial lawyer by training, David is also a seasoned patient advocate and author. Here, he shares some of his thoughts on his advocacy work with “Brain Tumour” readers.

David Arons

IBTA: David, what inspired you to become active in the brain tumor community?
David Arons: The brain tumor community is a community of heroes that needs help amplifying their voices. I wanted to bring to the National Brain Tumor Society (NBTS) my background as an advocate to help and empower members of the brain tumor community to have a voice in the policy-making process and to pursue a cure together.

IBTA: Please briefly describe your role at the National Brain Tumor Society.
David: As Chief Executive Officer, I lead our extremely talented staff. My specific role is to advance NBTS’ strategy to defeat brain tumors by funding innovative research, advocating for public policy, convening stakeholders including industry, and empowering patients and caregivers. I am also responsible for making sure NBTS is a strong and accountable charitable organization that provides a memorable, positive experience for anyone collaborating with our organization.

IBTA: What other work were you involved with before you became active in the brain tumor community?
David: Previously I worked at the American Cancer Society, and prior to that, I worked as a trial attorney. I was also the co-founder and co-director of the Center for Lobbying in the Public Interest. I have been involved in non-profits for most of my career, and believe in the power of not-for-profit organizations to help and transform our society. Read More

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