CONNECTing Neuro-Oncology Providers to Improve Approaches to Care and Treatment
, by NCI-CONNECT Staff
Neuro-oncologist Dr. Mark Gilbert shares how he is connecting healthcare providers through a program called NCI-CONNECT to improve approaches to care and treatment for patients with rare brain and spine tumors.
To advance the understanding of rare adult central nervous system (CNS) cancers, a program at the National Cancer Institute (NCI) is connecting healthcare providers with each other and information resources.
Co-leading the program, called NCI-CONNECT, is Mark Gilbert, M.D., chief of the Neuro-Oncology Branch at the Center for Cancer Research (CCR), NCI, at the NIH.
Early in his career, Dr. Gilbert recognized there was an area of unmet need for patients with brain tumors. He received his medical doctorate from Johns Hopkins University in 1982 and completed residencies in internal medicine, neurology, and neuro-oncology. “I learned most of oncology excludes patients with brain tumors, so it was an area that I wanted to focus on,” he says.
Over the past 32 years as a neuro-oncologist, Dr. Gilbert has garnered many accolades and led extraordinary initiatives to improve treatments and outcomes for patients with malignant brain and spine cancers, but most importantly, he has learned that every patient is unique.
Patients and their families often rise to the occasion and face the challenge of a brain and spine tumor diagnosis with strength and dignity. I have met some of the most amazing people in my practice.
Treating brain and spine cancer patients has also impacted Dr. Gilbert personally. “I have gained a unique perspective about the uncertainty of life and the importance of certain things and unimportance of other things that we often place tremendous amount of value on,” shares Dr. Gilbert. He believes that material objects are meaningless when facing a critical and potentially terminal illness. “When I am helping patients navigate their illness, the trivial things seem really trivial,” he says.
Treating Rare CNS Cancers
All primary brain and spine cancers are considered rare cancers. Many have less than 2,000 people diagnosed a year. The low incidence rates of these cancers mean providers and researchers face unique challenges treating patients and discovering new therapies.
“It’s difficult to complete studies to better understand CNS cancers because there are few patients for clinical trials and few tumor samples to study,” says Dr. Gilbert. “And without enough knowledge of the disease, it’s hard to establish standards of care and provide definite answers to important questions that patients and families pose.” Patients are forced to navigate a hardly understood disease.
To help eliminate some of the burdens patients and families face, the NIH provides consultations free-of-charge. After a patient is accepted on a study, treatments, tests, and other services at the NIH are free. This eliminates a huge financial burden for the patient and allows physicians to focus on their specific disease, optimizing treatment without the consideration of third-party approval or concerns about financial ramifications of recommending therapy.
Further, NIH providers believe in collaborating with a patient’s treating physician. “Treatments at the NIH are study-based, so therapies are provided- and we co-manage the patients with their local physicians. When patients need standard of care therapies, we often collaborate with their physician or healthcare team who prescribe and provide these treatments,” says Dr. Gilbert.
Patients and physicians can contact the Neuro-Oncology Branch at NCINOBReferrals@mail.nih.gov or 1-866-251-9686 for referrals or to make an appointment.
The Genesis of NCI-CONNECT
Dr. Gilbert, along with Terri Armstrong, Ph.D., deputy chief of the Neuro-Oncology Branch, recognized they had an unprecedented opportunity to focus research efforts on rare CNS cancers with funding from the Cancer Moonshot℠.
Thus, Drs. Gilbert and Armstrong developed NCI-CONNECT (Comprehensive Oncology Evaluating Rare CNS Tumors) to establish paradigms to study 12 rare adult CNS cancers. “Hopefully, if successful, we can apply our approach to all CNS cancers and rare cancers in general,” says Dr. Gilbert.
NCI-CONNECT is multidisciplinary. “Our approach is to connect basic science research to patient outcomes research and scientifically-based clinical trials with the aim of establishing better therapies and standard of care. This model could have a huge impact,” says Dr. Gilbert.
To overcome the challenge of reaching patients, NCI-CONNECT will partner with non-profit organizations and use social media and web-based educational tools.
NCI-CONNECT also plans to develop web-based educational content for physicians, nurses and researchers. “Healthcare providers need resources and a place to refer patients with rare CNS tumors, knowing that we will collaborate closely with them,” says Dr. Gilbert. Community-based providers also have the opportunity be part of a larger network of investigators, called the Brain Tumor Trials Collaborative (BTTC), who collaborate to advance treatments for patients with brain and spine tumors.
“We value our relationships with community-based providers and non-profit organizations because they can help identify patients who would benefit from our program activities,” says Dr. Gilbert. “Ultimately, broadening our reach will help accrue patients for clinical trials so we can improve approaches to care and treatment for patients with rare CNS cancers.”