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NCI-CONNECT Rare Brain and Spine Tumor Studies

Older Black doctor speaks with younger Black woman with cancer
Credit: iStock

What is NCI-CONNECT?

NCI-CONNECT (Comprehensive Oncology Network Evaluating Rare CNS Tumors) research studies are for adults with rare central nervous system (CNS) cancers. Some clinical studies are online or virtual and some require in-person visits to the NCI-CONNECT Clinic at the National Institutes of Health (NIH). NCI-CONNECT studies will help researchers better understand what causes brain and spinal cord tumors, with the aim to develop new therapies and improve patient outcomes.

Who is eligible to take part in NCI-CONNECT?

First, you will be evaluated by NCI’s Neuro-Oncology Branch healthcare team. You may be eligible to take part in an NCI-CONNECT study if you have a primary brain tumor or the following CNS tumors.

What is the status of NCI-CONNECT?

NCI-CONNECT clinical studies and trials have enrolled more than 409 people, including an online study to improve the understanding of outcomes and risk factors, a natural history study to better understand these tumors, observational studies to measure if an intervention helps improve outcomes, and several treatment trials. Observational studies include a virtual reality study to reduce distress, a smart wearable device to monitor and improve sleep patterns, and an individual therapy to reduce depression. Notably, results from the first prospective clinical trial for adults with ependymoma led to a change in treatment guidelines.

What is the cost to take part in NCI-CONNECT?

Patients with a primary brain or spinal cord tumor can contact the Neuro-Oncology Clinic at the NIH in Bethesda to schedule an evaluation or consultation. Consultations and treatments at NIH are free.

Headshot of José

“I know the study won’t help treat my cancer but gathering information about my rare tumor provides insight that hopefully will help other patients in the future.”

—José, participant in cancer research

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