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NCI-CONNECT Rare Brain & Spine Tumor Network
 

Progress to Advance Care, Treatments and Patient Outcomes for Brain Tumors

, by NCI-CONNECT Staff

Brain tumor scans

Neuro-oncologist Dr. Jing Wu, of the Neuro-Oncology Branch, CCR, NCI, reviews brain tumor scans. 

Credit: Neuro-Oncology Branch

Read about our advances in care, treatments and patients outcomes for brain and other central nervous system tumors in honor of Brain Tumor Awareness Month. 

An estimated 700,00 people in the United States are living with a brain tumor. Over 25,000 more will be diagnosed with a cancerous brain or other central nervous system (CNS) tumor this year. The causes are not known. And while males are slightly more likely to develop brain cancer than females, brain tumors do not discriminate.

In May, the brain tumor community joins together to raise awareness for brain tumors through education. By sharing the rarity and uniqueness of brain and other CNS tumors – 1.3% of all new cancers cases and over 130 different types – we can inspire research and clinical studies to improve diagnosis and standardize care.

We also hope to champion progress by sharing the work over the last year of our Neuro-Oncology Branch (NOB), Center for Cancer Research (CCR) at NCI, and NCI-CONNECT program to advance care, treatments, and patient outcomes.

Investigating New Therapies and Methods to Improve Outcomes

NCI-CONNECT Clinical Studies Expansion

In 2021, NCI-CONNECT expanded two clinical studies – an immunotherapy drug trial and a tumor tissue repository study – to its national network of collaborative institutions to reach more people with rare brain and spine tumors and help researchers advance their knowledge of the diseases faster.

The first-of-its-kind immunotherapy drug trial is designed to test whether stimulating the immune system using nivolumab is effective and can shrink or control the growth or spread of specific types of recurrent rare brain or spine tumors. The trial first launched in 2017 at the NOB. Now, the trial is being led by Associate Research Physician Marta Penas-Prado, M.D., of NOB, CCR, NCI, and is also testing the changes that nivolumab induces in immune cells in peripheral blood during treatment and whether nivolumab can improve the symptoms of people with these tumors. Read about the trial>

The new multi-institutional tissue outcomes study collects tumor tissue and comprehensive clinical data from deceased patients with rare brain and spine tumors and people that were pregnant at diagnosis or became pregnant after diagnosis of a primary brain tumor. The study is breaking silos by working across the NCI-CONNECT national network. It is led by Dr. Penas-Prado. Read about the study>

NCI-CONNECT First-in-Human Study

In other firsts, NCI-CONNECT launched a first-in-human phase I clinical trial for people with recurrent rare brain and spine tumors. Led by Brett Theeler, M.D., neurologist and neuro-oncologist in the United States Army Medical Corps and NCI-CONNECT clinical collaborator, the trial is studying ONC206, an oral, targeted cancer therapy. The trial tests the dosing and safety in adult patients. Read about the trial>

NOB Immunotherapy and Glioblastoma Trial

Glioblastoma is the most common type of primary brain cancer. People with the disease or a variant called gliosarcoma have poor long-term outcomes. Chief and Senior Investigator Mark Gilbert, M.D., of NOB, CCR, NCI, and co-lead of NCI-CONNECT, is leading a new clinical trial of an immunotherapy treatment to slow or stop the spread of cancer cells in people with glioblastoma and gliosarcoma and improve outcomes. The trial will also evaluate a test that may help determine who is likely to get an immune response. Read about the trial>

We designed the study based on quality science and built-in cutting-edge techniques. The study results should be a very important contribution to the field.

Dr. Gilbert

Outcomes Intervention Studies

NCI-CONNECT also launched three studies in 2021 to measure if an intervention helps improve outcomes under the leadership of Senior Investigator and Deputy Chief Terri Armstrong, Ph.D., of NOB, CCR, NCI, and co-lead of NCI-CONNECT. A virtual reality study with assistant investigator Amanda King, Ph.D., an iCURE postdoctoral fellow in the Patient Outcomes Program, for patients with brain cancer investigates if using a virtual reality headset to deliver relaxation techniques helps to reduce distress and anxiety people experience ahead of their MRI scans and clinical appointments.  Read about the study>

A sleep observation study with assistant investigator Dorela Shuboni-Mulligan, Ph.D., CRTA postdoctoral fellow in the Patient Outcomes Program, measures daytime sleepiness and activity patterns using a smart wearable device. This will provide insight into the impact of sleep disturbance on those with brain cancers. Read about the study>

The CALM therapy intervention study with assistant investigator Alvina Acquaye, psychosocial behavioral specialist for NCI-CONNECT, uses individualized therapy to address negative feelings that may improve a person’s mood and the way they feel. This study will determine if using the CALM intervention helps to reduce depressive symptoms in people with brain cancer. Read about the study>

Bringing the Community Together to Advance Science and Patient Care

Virtual educational webinars were held to join experts across disciplines and advocates to lecture and provide forums for thoughtful discussion of challenges and solutions.

Targeting CNS Tumor Metabolism

To advance the field of CNS tumor metabolism, Investigator Mioara Larion, Ph.D., of NOB, CCR, NCI, and Dr. Gilbert co-led a virtual symposium with the Society for Neuro-Oncology (SNO) on April 6 and 7, 2021. It was the first conference entirely dedicated to education and research on brain tumor metabolism. Over 500 people registered to attend. The conference brought together clinicians, researchers, trainees, patients, and experts in the field of metabolism. Read about CNS tumor metabolism>

The five domains of cancer survivorship and a small group for each domain. Psychosocial effects, physical effects, chronic conditions, recurrences and new cancers, and health promotion.
Credit: NCI-CONNECT
Survivorship Care in Neuro-Oncology Symposium

Assistant Research Physician Heather Leeper, M.D., of NOB, CCR, NCI, and Dr. Armstrong co-led the Survivorship Care in Neuro-Oncology Symposium on June 21 and 22, 2021, which brought together neuro-oncology providers, researchers, advocates, patients, and care partners virtually to learn and discuss the challenges experienced by persons living with brain and spine tumors and develop survivorship care guidelines. The symposium was attended by over 250 people. Read about the symposium>

Introduction to Career Pathways in Neuro-Oncology

On January 11, 2022, the NOB partnered with SNO to offer trainees of all disciplines the opportunity to learn about neuro-oncology careers in basic science, clinical care, and research. The free, virtual event, offered insights shared by world-renowned neuro-oncology professionals, opportunities, and strategies to expand a neuro-oncology career, and a post-session panel discussion for attendees to share their thoughts with experts. View the event recording>

NIH Tumor Boards and Journal Clubs

To encourage referrals and further collaboration, we expanded in 2020 our virtual journal club and weekly multidisciplinary NIH Neuro-Oncology Tumor Board live sessions to include investigators and cases from participating NCI-CONNECT consortium sites. As of November 2021, 28 providers have presented 41 cases at 24 tumor board meetings with 60 to 70 participants. Read the abstract>

Awarding and Recognizing Pioneering Work

National Research Awards

In 2021, Lasker Clinical Research Scholar and Investigator Jing Wu, M.D., Ph.D., of NOB, was accepted to the NExT (NCI Experimental Therapeutics) Program which provides resources for projects focused on developing therapies for unmet needs. Dr. Wu leads the Translational Research Program at NOB, which is dedicated to developing clinical trials for people living with brain and spine tumors. Her work combines both clinical and laboratory research and is making a difference in the field. Read about her research>

Dr. Penas-Prado received an Award for Excellence in Rare CNS Disease at the 2021 SNO Annual Meeting for her abstract on the interim analysis of the immune checkpoint inhibitor nivolumab for people with rare CNS cancers trial. As of March 10, 2021, the interim analysis of the clinical trial determined that the disease control rate exceeded the minimum required to pass the interim analysis in the heavily pretreated cohort and continue the trial. Read about the award>

Ultimately, this multicenter study should advance our understanding of these tumors, set the foundation for future trials, and provide better treatment options.

Dr. Penas-Prado

Dr. Penas-Prado also received the 2022 CCR Staff Clinician Leadership Merit Award for her leadership of our rare CNS tumor clinic and clinical trials, a national tumor board, and an international symposium. Read about Dr. Penas-Prado>

Dr. Leeper received an Award for Excellence in Survivorship at the 2021 SNO Annual Meeting for her abstract with the NOB Outcomes Section on whether economic strain and mood disturbance during the COVID-19 pandemic may have additional impacts on patients’ symptoms and function. Dr. Leeper concluded that worse financial toxicity scores were strongly associated with worse overall symptom burden, worse anxiety and depression scores, and worse overall health-related quality of life scores. Read about the award>

Trainee and Mentor Awards

Postbaccalaureate Research Fellow Yeonju Kim was selected as the CCR Outstanding Post-Graduate Trainee at the 22nd Annual CCR Fellows and Young Investigators Colloquium where she gave an oral presentation. Kim is mentored by Staff Scientist Orieta Celiku, Ph.D., of NOB, CCR, NCI, Dr. Gilbert, and Dr. Armstrong and her abstract is titled, ACROSS: Accrual and Access to Neuro-Oncology trials in the United States. Read the abstract> 

Dr. Celiku received the 2022 NCI Staff Scientists and Staff Clinicians Outstanding Mentor Award for her exemplary mentorship to develop the next generation of cancer researchers. Read about Dr. Celiku> 

Sharing Progress to Raise Awareness

The NOB and NCI-CONNECT published over 80 abstracts, which were presented at national meetings, one journal supplement, 10 manuscripts and modified two NCCN guidelines for rare CNS tumors in 2020 and 2021. Our progress is made possible by the participation of patients and their care partners in our programs.

To continue our efforts in brain and spine tumor care, treatment, and research and to improve survival and quality of life for people living with the disease, we encourage you to join with us for Brain Tumor Awareness Month in May and share these advances. Educating those living with and not yet diagnosed with a brain or spine tumor can make an impact.

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