National Brain Tumor Society Launches New Initiative to Prepare Patients for Precision Medicine and Clinical Trial Opportunities
New resources will assist patients and care-partners through the brain tumor medical experience and help connect patients with clinical research opportunities
National Brain Tumor Society (NBTS), the largest nonprofit dedicated to the brain tumor community in the United States, today announced the launch of a new patient and care-partner education and preparedness effort. The new initiative will provide those going through the brain tumor medical experience with the information, tools, and guidance needed to play a more active role in their treatment planning and decisions. This effort, including online resources called “The Brain Tumor Experience,” seeks to address gaps in how brain tumor patients and their care-partners obtain and consume information that is vital to receiving personalized care for their diagnosis and at every stage of the brain tumor medical experience.
“The emotion, confusion, and shock that overwhelms a newly diagnosed brain tumor patient and their loved ones is second-to-none,” said David Arons, chief executive officer at the National Brain Tumor Society. “Thus, we are aiming to educate patients and care-partners on the right questions to ask of their medical team and at the right time of their care. We are also providing the means for patients and their care-partners to explore participating in clinical research early in the course of treatment, so, if appropriate, they can consider enrollment in a well-matched clinical trial.”
Newly-diagnosed brain tumor patients have received devastating news, presented with a slew of confusing medical terms, and invasive and risky brain surgery is being recommended within 48 hours. It is understandable that during this frantic time, decision-making can be extraordinarily challenging. Yet this period is critical, as once any form of treatment begins it could exclude patients from a number of potentially beneficial clinical trial opportunities.
Patient advocacy groups are familiar with this difficult experience, and thus uniquely positioned to engage and communicate with patients and care-partners and provide resources – on-line and off-line – that help brain tumor patients through their course of care. The tools and educational opportunities offered by this new initiative will include guidance on how to better interact with care teams to partner more proactively in the treatment planning and decision-making process, from first diagnosis and initial consultation, to disease recurrence and beyond. Specific resources will include:
- The Brain Tumor Experience Webpages: A set of web-based resources that take online visitors through the key junctures of living with a brain tumor, offering tips and considerations as they cope with a brain tumor diagnosis. This includes pre-diagnosis at the symptoms level, to initial diagnosis, pre- and post-surgery, treatment paths, financial options, post-treatment management and care, survivorship or at recurrence, and rest of life.
- The NBTS Brain Tumor Experience Providers Pack: A set of flyers, booklets, posters and other off-line information that will be available at select medical institutions, hospitals and cancer centers across the United States to provide guidance and information about managing life with a brain tumor.
- The MyGrayMatters Personal Materials: A binder and materials for patients and care-partners to take notes and keep track of all aspects of their own, personal brain tumor experience. We encourage patients to write down and record questions they want to remember to ask, answers to those questions, clinical trial options, post-treatment considerations, and anything that will help them live a higher quality of life and provide the best chance to survive and thrive.
- Questions and Considerations Materials: A list of questions to ask at every step along the brain tumor experience. These helpful worksheets give patients and care-partners questions to ask all stakeholders involved in a patient’s unique path for dealing with a brain tumor.
- The NBTS Clinical Trial Finder: Launched in 2017, this brain tumor-specific trial finder enables visitors to search for appropriate clinical trials based on trial regional location, type of tumor, gender of patient, primary or metastatic, and other filters. The NBTS Clinical Trial Finder will be continually updated to enhance its search functionality and the ease-of-use and convenience for patients and care-partners.
The patient and care-partner engagement initiative is largely informed by a survey of more than 1,400 brain tumor patients and caregivers. The results of the survey underscored the need for better resources and decision-support that will enable all patients and their care-partners to be more fully informed about their diagnosis, treatment options, including the importance of considering participation in appropriately matched clinical trials.
Strikingly, the survey found that only seven percent of patients and caregivers indicated that they actively participated in their treatment planning (providing input and influence over their treatment decisions), even after undertaking research on their treatment options. Further, though a strong majority of respondents impacted by the most common malignant brain tumors reported they had sought information on clinical trials, these patients and caregivers indicated that the top challenge encountered when searching was uncertainty of where to find information. And, specifically when ranking their preferred methods of receiving information about the brain tumor treatment experience, via website was respondents’ top choice, even above in-person meetings and well above telephone hotlines.
Nearly 80,000 Americans will receive a brain tumor diagnosis in 2018, and with only a 35 percent five-year survival rate for primary malignant brain tumors, an estimated 17,000 people will die because of brain cancer this year. Brain tumors are now the leading cause of cancer-related death in children 19-years old and younger, accounting for three out of every 10 cancer deaths. More so than any other cancer, a brain tumor can have life-altering psychological, cognitive, behavioral, and physical effects. There are no known prevention or early detection methods, few available treatments, and there is no cure.
About National Brain Tumor Society
National Brain Tumor Society (NBTS) is the largest nonprofit organization in the U.S. dedicated to the brain tumor community. We are fiercely committed to finding better treatments and driving rapid progress toward a cure for brain tumors. We drive a multi-faceted and thoughtful approach to aggressively influence and fund strategic research, as well as advocate for public policy changes, in order to achieve the greatest impact, results, and progress for brain tumor patients. Money raised by the generous donations of our supporters has directly funded groundbreaking discoveries, programs, clinical trials and policy initiatives. To learn more visit www.braintumor.org