New tool will make it easier for brain tumor patients to find up-to-date information on clinical trials, enabling patients to better engage with medical research and make more informed decisions about their own treatment options in the era of precision medicine
National Brain Tumor Society (NBTS), the largest nonprofit dedicated to the brain tumor community in the United States, today announced the launch of the first NBTS Clinical Trial Finder, designed specifically to connect brain tumor patients with open trials that might be suitable and advantageous treatment options to consider. The trial finder is hosted on the National Brain Tumor Society website (braintumor.org) and also available directly via the URL, trials.braintumor.org.
Low clinical trial enrollment rates are a major issue facing the neuro-oncology field and brain tumor community. Recent research shows that one of the main reasons so few patients participate in a clinical trial is simply because they were unaware of, and uninformed about, the different choices available to them. Additionally, the ease of finding and navigating existing clinical trial finders on the internet has been described as difficult and not user-friendly for patients and caregivers to navigate. The new NBTS Clinical Trial Finder seeks to simplify the process by providing an easy to access, search, and explore interface. It was designed specifically for brain tumor patients by a volunteer web developer who, himself, has successfully battled a brain tumor.
“I believe that greater awareness of available clinical trials can empower individual patients, as well as the entire brain tumor community, to get more involved in medical research and their own treatment planning,” said Michael Wenger, creator of the NBTS Clinical Trial Finder and a brain tumor survivor. “Ultimately, I hope that this will lead to more treatment options in the future and that the NBTS Clinical Trial Finder encourages patients like me to consider, and engage with, clinical research from the time of diagnosis and beyond.”
Clinical trial enrollment is a significant barrier to faster, more efficient, and successful new drug development across all of oncology. It is estimated that less than five percent of adult cancer patients will ever participate in a clinical trial. This has consequences for clinical research and drug development efforts, including many planned studies either having to delay their start date or shutdown all together due to under-enrollment. Ultimately, this means the latest, cutting-edge science and promising therapies are delayed in reaching patients. It can also hinder evidenced-based clinical practice and portend significant waste in field-wide R&D efforts.
“Clinical trials are not only a crucial step in the process of bringing a new medicine to market, but are also among the best vehicles for patients with difficult-to-treat diseases to receive earliest access to groundbreaking potential new therapies,” said David F. Arons, JD, Chief Executive Officer, National Brain Tumor Society. “We hope the new NBTS Clinical Trial Finder will be a starting point to helping patients who are unaware of the options that exist for them, in the form of clinical trials, to have an easier and more convenient resource to engage deeper with emerging therapeutic opportunities and alternatives. NBTS thanks Michael Wenger for his extraordinary volunteerism and work on this effort. Additionally, we encourage patients to talk to their medical team and consider all treatment options that may be available for them, including both standard of care and potential clinical trials that may be appropriate for their specific medical condition and for which they may be eligible.”
The NBTS Clinical Trial Finder is the first phase of a forthcoming major patient education and engagement program which will seek to help support patient-centered research and drug development; empower patients to play an active role in the research and treatment process; and improve brain tumor clinical trials through better awareness, enrollment, and patient-input.