Forging an Alliance of Care to Meet the Unmet Needs of Rare Brain and Spine Tumor Patients
, by Raleigh McElvery, Neuro-Oncology Branch Scientific Communications Editor
Providers in the NCI-CONNECT Clinic collaborate with a patient’s local specialists to offer guidance and opportunities to participate in cutting-edge clinical trials.
Erin Dunbar, M.D., is director of neuro-oncology at Piedmont Atlanta Hospital and leader of the Piedmont Brain Tumor Center.
Erin Dunbar, M.D., has been referring brain and spine tumor patients to the NCI for the past decade. As director of neuro-oncology at Piedmont Atlanta Hospital and leader of the Piedmont Brain Tumor Center, Dr. Dunbar says NCI’s collaborative care network is a lifeline.
“It's a lifeline for patients and families, but it's also a lifeline for doctors like me,” she explains. “Patients and their families can receive access to world-class care, and I get to connect with other clinicians and investigators who are passionate about leading-edge clinical science.”
Located at the NIH Clinical Center in Bethesda, Maryland, the NCI Neuro-Oncology Clinic—run by the Center for Cancer Research’s Neuro-Oncology Branch (NOB)—provides specialized treatment and services to those with brain and spine tumors. All central nervous system (CNS) tumors are rare: They represent less than two percent of cancer cases diagnosed each year in the United States. But the Neuro-Oncology Clinic contains a special subsection, known as the NCI-CONNECT Clinic, that focuses on the rarest of these tumors.
Evidence-Based Hope
Over the years, Dr. Dunbar has served as a key member of the NOB’s Brain Tumor Trials Collaborative (BTTC), a national network of neuro-oncology clinicians and scientists who work together to provide clinical trials and patient care. During that time, Dr. Dunbar has also referred many patients to both the Neuro-Oncology and NCI-CONNECT Clinics.
Those who visit the NIH Clinical Center are treated without charge and receive support for travel expenses, food, lodging, and outpatient treatment, which Dr. Dunbar says helps reduce financial stress. She focuses on serving underrepresented patient populations, who often face barriers to care such as limited access to transportation, health care resources, and education.
Marta Penas-Prado, M.D., is a neuro-oncologist focused on caring for patients with rare brain and spine tumors in the NCI-CONNECT Clinic at the NIH Clinical Center.
The NIH does not bill for services because patients visiting the Clinical Center consent to participate in research studies, which provide valuable knowledge to help others with the same diagnosis.
“Here at the Neuro-Oncology and NCI-CONNECT Clinics, we do not provide standard therapies that patients can access through their outside health care team,” says NCI-CONNECT and NOB Senior Clinician Marta Penas-Prado, M.D. “Although we can provide advice about these standard therapies and refer patients to our neurosurgery and radiation colleagues, our main focus is conducting research studies that improve patient care and outcomes.”
While research studies are often associated with experimental drugs or treatment interventions, some are observational and do not involve testing new treatments. One such observational study is the NOB’s Natural History Study, which collects information and data from patients to track their disease over time. Nearly everyone who visits the Neuro-Oncology and NCI-CONNECT Clinics enrolls in the Natural History Study, which is open to all adult patients with a primary CNS tumor.
Dr. Dunbar says referring patients to NCI-CONNECT’s large portfolio of trials allows her to provide “evidence-based hope”—a promising treatment plan informed by rigorous science.
“Working with NCI-CONNECT gives my patients access to services and treatment that they couldn’t get any other way,” she explains. “That’s because NIH can do studies nobody else can. They can include people with more advanced cancers, or people who wouldn’t otherwise fit standard clinical trial inclusion criteria. That means NIH studies are inclusive of more patients, which ultimately helps to meet unmet needs in underrepresented patient populations.”
“When a referring physician contacts our team to discuss a case, this initiates an alliance of care,” Dr. Penas-Prado explains. “We build a team with the patient’s local specialists so we can work together and provide the best care possible.”
An Expert Consensus
Adam Cohen, M.D., is co-director of neuro-oncology and head of brain tumor research at the Inova Schar Cancer Institute.
While all cancer patients face hurdles associated with their disease, CNS tumors come with their own unique challenges, says Adam Cohen, M.D., a longtime BTTC collaborator. As co-director of neuro-oncology and head of brain tumor research at the Inova Schar Cancer Institute, Dr. Cohen sees people with many different types of brain and spine tumors.
“When I refer patients to the NCI-CONNECT Clinic,” he says, “we get the advantage of the NIH’s cutting-edge pathology and analysis resources. We also get the benefit of the NCI-CONNECT team’s decades of experience.”
Even after patients have completed their regular assessments and treatment at the NCI-CONNECT Clinic, Dr. Penas-Prado encourages them to return for check-ins. “We do a much better job of contributing meaningfully to their care if we can maintain engagement from time to time,” she says. “We want to see them even if there are no new developments.”
Dr. Penas-Prado and her team also maintain continued contact with referring physicians like Drs. Cohen and Dunbar. “Having multiple people on your side who are communicating with each other regularly leads to better ideas and better care,” Dr. Penas-Prado explains.
When patients are unable to physically make it to the NIH Clinical Center, providers like Dr. Cohen have the option of sharing their cases at the NOB’s Neuro-Oncology Tumor Board. Each week, a mix of experts from multiple institutions across the United States gather virtually to provide guidance and recommendations.
“I usually bring cases to the tumor board to ensure that I have the diagnosis right, and also to discuss specific treatment options,” Dr. Cohen says. “Sometimes I also want to determine if a patient is eligible for a particular trial. In those instances, getting an expert consensus is very helpful.”
Whether he’s presenting cases to the virtual tumor board or referring patients for in-person visits, Dr. Cohen says he likes to stay in touch with the NCI-CONNECT providers. “I also encourage my patients to do the same,” he says. “That’s because, in addition to being great scientists, the providers at the NCI-CONNECT Clinic are nice people. They care about the patients and want to hear how people are doing.”