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NATIONAL INSTITUTE NCI-CONNECT Patient Engagement

Ways adult patients with rare central (CNS) tumors can participate.

If Your Tumor If Your Tumor is is Stable Newly-Diagnosed You do not need treatment or Recurrent or a second opinion. You need treatment or a second opinion.

Online Study Clinical Participate in a web-based Assessment questionnaire about your Visit the NIH for an evaluation personal and medical history, and consultation with our symptoms, treatments, and neuro-oncology care team. quality of life to help us better Consultations are free. You will understand risk factors and receive an accurate diagnosis improve patient care. and treatment guidance.

Immune Checkpoint Inhibitor Nivolumab for Patients with Rare CNS A study for adults with (CNS) cancers.

Objective National Cancer Institute (NCI) researchers are conducting a study of patients with CNS cancers. Clinical Trial This study will test whether stimulating the immune systemNatural using the drug History nivolumab Study can shrink or spine tumors or increase the time itTake takes forpart them in to thegrow naturalor spread. history study, Participate in a rare CNS whichclinicaltrials.gov includes geneticID: NCT03173950 testing and tumor clinical trial to help questionnaires to help us better doctors determine whether What the study involves: understand brain and spine tumors. After new treatments are safe and

• Full physical and neurological examination you are accepted on a study, treatments, effective and work better • Health and symptoms questionnaire tests, and other services at the NIH are free. than current treatments. • MRIs and neurological function tests • Study of tumor tissue from prior surgeries • Receive drug nivolumab for up to 20 treatments over 64 weeks NCI Digital • Your samplesStyle used forGuide genetic testing • Monitoring for up to 5 years after treatment December 2019 • All tests, procedures and medications provided at no cost Tumor Types Include: • Compensation may be provided • Atypical Teratoid Rhabdoid Tumor (ATRT) You can participate if you: U.S. Department of Health & Human Services | National Institutes• of HealthChoroid Plexus Tumors (Carcinoma, Papilloma, Atypical Papilloma) • Are age 18 or older • • Are diagnosed with recurring CNS tumors • • Do not have hepatitis • or Primary CNS • Are not pregnant or breastfeeding • Histone Mutated • You can participate in this study by visiting the NIH • (High Grade) at Bethesda, Maryland for a clinical assessment. • Pineal Region Tumors (Pineoblastoma, Pineocytoma, PTID, PTPR) Questions? • Pleomorphic Xanthoastrocytoma (PXA) and Contact us at (240) 760-6010 or Anaplastic Pleomorphic Xanthoastrocytoma (APXA) Follow-up Care [email protected] • Primitive Neuroectodermal Tumors (PNET) Our neuro-oncology care team follows your care and works with your NATIONAL INSTITUTES OF HEALTH NATIONAL CANCER INSTITUTE CENTER FOR CANCER RESEARCH local doctor to ensure you receive the best care during and after treatment.

Learn more at: cancer.gov/nci-connect Contact us: [email protected] | (240) 760-6530 Share with others to engage patients in NCI-CONNECT. cancer.gov/nci-connect