When diagnosed with a serious medical condition, patients want to know that they are receiving the best possible medical care from a medical professional or institution. This is especially true for those diagnosed with a primary or metastatic (secondary) central nervous system (CNS) tumor, who often ask “Where should I get treated?”
The guiding principles for adult CNS tumor treatment centers, which generally correlate with quality brain tumor care, exist to help patients and their loved ones select the best care possible based on their individual needs. They are meant to be used as a tool for education and guidance.
Dedicated Program:
This medical institution offers a program dedicated to the treatment of adults with CNS tumors (brain/spine, nerves).
This program has specialist clinical staff trained in the diagnosis, treatment, and care of adult patients diagnosed with CNS tumors.
Patient Volume:
This CNS tumor treatment program treats at least 40 adult patients diagnosed with primary CNS tumors per year. If this program treats metastatic CNS tumors, at least 20 adult patients diagnosed with metastatic CNS tumors are treated per year.
Multidisciplinary Team:
This CNS tumor treatment program has a designated CNS multidisciplinary team which includes at least one of each type of the following specialists, each devoting at least 40% of their clinical hours to the treatment of CNS tumors and each specialist must either be on-site or at an affiliated medical institution or practice:
Molecular Testing:
This CNS tumor treatment program performs either on-site or outsourced testing for molecular diagnostics to determine accurate tumor diagnosis, inform prognosis, and guide treatment. Testing is done in accordance with the latest World Health Organization (WHO) criteria and performed in an accredited laboratory.
Clinical Trials:
This CNS tumor treatment program offers clinical trials for CNS tumors and/or actively navigates patients to other medical centers that provide clinical trials for CNS tumors.
Tumor Board:
This CNS tumor treatment program has a clinical tumor board that meets regularly, either in-person or virtually.
Clinical Supportive Services and Resources:
This CNS tumor treatment program (or its affiliated medical institution or practice) offers a range of clinical supportive services for patients and their caregivers. Examples of clinical supportive services include, but are not limited to, the following: neuropsychological evaluation, cognitive rehabilitation, speech therapy, physical/occupational therapy, palliative care, oncology social worker, brain tumor support group, survivorship service, and caregiver support service.
American Brain Tumor Association
Brain Tumor Network
CERN Foundation
Head for the Cure
International Brain Tumor Alliance
Musella Foundation
National Brain Tumor Society
Oligo Nation
Society for NeuroOncology
Southeastern Brain Tumor Foundation
The Brain Tumor Charity
A working group, lead by the ABTA, was formed to determine a set of guiding principles by which adult CNS tumor treatment programs in the U.S. could be assessed for offering quality in treatment and care either within or near the patient’s community.
Members of the working group included representatives not-for-profit and other patient advocacy organizations serving the brain tumor community. In addition, clinicians in the brain tumor field reviewed and provided input.
The working group acknowledges that a program that adheres to these guiding principles does not necessarily guarantee the best possible medical care. Similarly, a program that does not adhere to all of these guiding principles can still provide quality care. The working group advocates for these guiding principles to be used as an aspirational framework, upon which treatment centers could build elements of CNS tumor care.
American Brain Tumor Association
8550 W. Bryn Mawr Ave. Ste 550
Chicago, IL 60631
