National Cancer Institute
NCI-CONNECT Patient Engagement
Ways adult patients with rare central nervous system (CNS) tumors can participate.

If your tumor is stable, you do not need treatment or a second opinion. You can complete an online study. Participate in a web-based questionnaire about your personal and medical history, symptoms, treatments, and quality of life to help us better understand risk factors and improve patient care.

If your tumor is newly-diagnosed or recurrent, you will need treatment or a second opinion.

No matter if your tumor is stable or not, the next step is undergoing a clinical assessment. Visit the NIH for an evaluation and consultation with our neuro-oncology care team. Consultations are free. You will | receive an accurate diagnosis and treatment guidance.

Then you can take part in the natural history study, which includes genetic testing and questionnaires to help us better understand brain and spine tumors. After you are accepted on a study, treatments, tests, and other services at the NIH are free.

You can also participate in a rare CNS tumor clinical trial to help doctors determine whether new treatments are safe and effective and work better than current treatments.

You will then have follow-up care. Our neuro-oncology team follows your care and works with your local doctor to ensure you receive the best care during and after treatment.

Learn more at:
cancer.gov/nci-connect
Contact us nciconnect@mail.nih.gov or (240) 760-6530. Share with others to engage patients in