You are not alone in your journey with a rare brain or spine tumor. The NCI-CONNECT Clinic brings together adults with the same rare brain or spine tumor and their caregivers to receive special services.
The NCI-CONNECT Clinic is located at the NIH Clinical Center in Bethesda, Maryland and led by the NCI Center for Cancer Research’s Neuro-Oncology Branch (NOB). Patients at the NIH Clinical Center consent to participate in research studies (protocols) and are treated without charge. NIH does not bill for any services. Patients also receive support for travel expenses, food, lodging and outpatient treatment. First visit services include:
- A review of your diagnosis. Our team will evaluate your tumor tissue prior to your first visit to confirm your tumor type. We will also look for gene changes that could cause cancer and help us treat it.
- Consultations with our expert healthcare team. These involve:
- Group meetings with a health and wellness expert. You will learn coping and wellness techniques and meet others with your same diagnosis.
- A personalized meeting with a genetic counselor to determine if you or your family are at risk for developing cancer.
- A meeting with our expert healthcare team to answer questions about your diagnosis and discuss treatment and clinical trial options.
To participate in the NCI-CONNECT Clinic, have your doctor contact us at NCINOBReferrals@mail.nih.gov or call 1-866-251-9686 or 240-760-6010 (Monday through Friday, 9 a.m. to 5 p.m. ET) to discuss the best options for your care. Please understand that we are not accepting self-referrals or international patients at this time, but your care remains our top priority.
What to Expect from Your Visits to the NCI-CONNECT Clinic
A precise cancer diagnosis allows doctors to determine the best treatment for you. It also helps predict your prognosis, which is the likely outcome of your disease and your chance of recovery.
In preparation for your first NCI-CONNECT Clinic visit, your case will be reviewed by a neuropathologist—a doctor who examines brain and spine tumor tissue to make a pre¬cise diagnosis. Our neuropathologist will:
- Review the pathology of the tumor to learn more about the size, shape, and appearance.
- Consult with other clinical specialists to discuss the imaging and clinical features of the tumor.
- Perform special genetic-molecular analysis to better classify the tumor. This may include gene-panel sequencing and DNA methylation testing.
Our team asks for tumor tissue in the form of a tissue block or unstained slides from the hospital where you had surgery. If you have not had surgery or a biopsy, our NCI-CONNECT healthcare team may consult with NIH’s neurosurgical oncology team.
A precise diagnosis enables doctors to personalize your care. The pathology results will be discussed with you during your consultation with our healthcare team. After your visit, your records from your NCI-CONNECT Clinic visit will be shared with your doctor at home.
Healthcare Team Consultation
Our expert healthcare team meets with you to help you understand your diagnosis, discuss possible treatment options, and follow-up plans.
During your NCI-CONNECT Clinic visits, you will have a personalized meeting with a nurse practitioner and a neuro-oncologist. Our healthcare team specializes in treating rare brain and spine tumors and will work together with your doctor at home to ensure you get the best care.
Our healthcare team will:
- Evaluate your history, tests, MRIs, blood work, and pathology results.
- Meet with you to talk about your medical history.
- Discuss your pathology results with you.
- Select the best treatment or care plan for you.
- Meet with you to discuss your treatment or care plan. This may include clinical trial options.
- Answer any questions you may have.
- Share and discuss your test results and care plan with your doctor at home.
CARES Group Meetings
Coping with a rare brain or spine tumor may make you feel isolated and unsure of how to stay healthy. This can also affect your loved ones. Our health and wellness counselor can help by teaching you ways to improve your health and well-being through our CARES (Coping, Advocacy, Relationships, Education, Support) group. Participants learn coping and wellness techniques and meet others with the same diagnosis, including:
• Learning techniques to improve your and your caregiver’s quality of life.
• Learning tips from others with your diagnosis.
• Getting educational resources.
Follow us on Twitter for more coping tips @NIHBrainTumor and search for the hashtag #NCIconnect.
Join our closed Facebook group, NCI-CONNECT Community, to connect with other patients and caregivers.
During your NCI-CONNECT Clinic visits, you will have one or more personalized meetings with a genetic counselor. A genetic counselor helps determine if your cancer is hereditary (that is, passed down through a family) and what that means for you.
While very few CNS cancers are hereditary, all are caused by genetic changes. Studying these changes helps researchers understand why brain and spine tumors occur in certain people. It also helps researchers develop treatments and improve care.
Our genetic counselor will:
- Meet with you to talk about your personal and family medical history.
- Decide if genetic testing is right for you. Genetic testing involves reviewing your saliva, blood, and tumor tissue samples to look for genetic changes to find out if your tumor is hereditary.
- Discuss your genetic test results and how the results affect your and your family’s medical care.
- Answer any questions you may have.