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From the CEO’s Desk: Know Your Options – A New Resource for Brain Tumor Patients

The new NBTS Clinical Trial Finder 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 – including clinical trials – in the emerging era of precision medicine.


Dear Brain Tumor Community:

With increasing frequency, we are hearing from patients and caregivers that they want to know more about clinical trials.  At the individual level, we all want to better understand what options might be available – especially those that might be targeted for particular types of brain tumors. As we look at how to help the entire brain tumor community — and the paucity of treatment options available for malignant brain tumors — we know we need to better help patients and caregivers appropriately engage in the clinical research opportunities that may be right for them. It is with these motivations in mind that we launched the new NBTS Clinical Trials Finder. It is in its first iteration and we hope you will help us make it better for everyone. Following are some thoughts on the role of clinical trials and our aims with the new tool.

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The journey to creating a new medicine or other treatment for brain tumor and cancer patients starts with a discovery in a scientific laboratory and ends when the U.S. Food and Drug Administration (FDA) approves the therapy for widespread use in the patient population the treatment was designed for. In between, is the intensive process of determining that the prospective new treatment is, indeed, safe and effective for patients. This work begins with experiments in tumor cells in lab dishes, and then lab mice (or other animal models), and finally with the pivotal step of evaluating the treatment in human patients, known as clinical trials.

CTF-Social-ImageInformation learned from clinical trials is critical to the FDA’s decision to approve a new treatment or not. Even if a potential new medicine performed well in lab dishes or mice, there is no substitute for examining how that treatment will ultimately work in human patients. Therefore, it is of the utmost importance, and in the absolute interest of the brain tumor community, to strive to make clinical trials operate as effectively and efficiently as possible.

Yet, currently a major barrier to faster and better clinical trials in neuro-oncology is the difficulty many trials have in simply finding enough patients willing to volunteer and participate in this crucial aspect of medical research and development.

Recent research estimates that less than 5% of adult cancer patients will ever participate in a clinical trial. This has consequences for research and drug development efforts, including many planned trials either having to delay their start date or shutdown all together due to under-enrollment. The same research has revealed that 40% of all clinical trials failed to achieve minimum patient enrollment, and more than three of five pivotal phase III trials failed to do so. Delays or shutdowns of clinical trials can add millions of dollars and months to the process of getting a new treatment to patients.

At this point, it’s important to pause for a moment and make something else clear: for diseases like most brain tumors — where there are, unfortunately, very few effective treatments currently available – clinical trials can be one of the few opportunities for patients to receive and benefit from the latest cutting-edge science and emerging therapies. That is to say, despite some misperceptions, clinical trials are not just options of last resort; they can also offer certain patients access to promising new treatments that are not yet available to the general public, as well as expert and rigorously-monitored state-of-the-art medical care during the trial.

So, if clinical trials can sometimes be viable treatment options for patients, and are also critical for advancing the field, why do so few choose to participate in this aspect of medical research?

Well, for one, there are many myths – as eluded to earlier – about clinical trials, including that patients could get a placebo (less than 1% of cancer clinical trials ever use a placebo) or that you’re only benefitting future patients (95% of clinical trial participants said they would do so again, and 99% of clinical trial participants rated their experience as either ‘fair,’ ‘good,’ or ‘excellent.’). These, and some of the other biggest myths, are well documented – and ‘busted’ – already by our friends at Dana-Farber Cancer Institute and the Cleveland Clinic.

But, perhaps equally as important is the simple fact that too many patients are unaware or under-educated about the possibilities and choices clinical trials may offer. In fact, in a recent NBTS patient and caregiver survey (full results forthcoming), only 41% of respondents indicated their medical team talked to them about clinical trial enrollment. Further, patients and caregivers researching clinical trials on their own – via existing clinical trial finders – report finding the platforms and user-interfaces difficult to navigate, search, and interpret.

It is a culmination of all these challenges that led to National Brain Tumor Society’s interest in creating a better, simpler, and more user-friendly clinical trial finder that delivers filtered results specifically for brain tumor patients seeking to more easily engage in medical research, clinical trials and in their own treatment planning.16143723_10101049805533576_889809915130003950_o

Created by an outstanding volunteer developer, Michael Wenger, a brain tumor survivor himself, the new NBTS Clinical Trial Finder (trials.braintumor.org) allows patients and their caregivers to seeks out trials that may be suitable options for their specific tumor type, grade, stage/status of treatment (newly diagnosed, recurrent, etc.), as well as allows searchers to filter results by age, gender, type of trial interested in, and location/distance willing to travel.

Our hope is that this new resource will provide brain tumors patients and their caregivers the opportunity to pursue a more active role in their own treatment and explore the full potential of treatment options, while simultaneously contributing to medical research and playing an important role in the discovery of new treatments for themselves and all current and future patients.

While clinical trials ultimately might not be the best choice for some brain tumor patients, we believe it is important that all patients at least know all the choices for their treatment before making such a critical decision. Further, clinical trials will remain vital to determining the treatments of the future for brain tumor patients, and, thus, their ability to more rapidly translate scientific discoveries into new therapies would benefit significantly from greater participation from patients who might also personally benefit from enrolling.

Again,it is our goal for the NBTS Clinical Trial Finder to help individuals access all the information they need before determining whether or not they are one of those patients. Thus, we recommend all patients to talk to their medical teams and consider all treatment options that could be right for them, including both standard of care as well as the potential clinical trials they may be eligible for.

Sincerely,

David F. Arons, JD

Chief Executive Officer

National Brain Tumor Society

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