sign in sign up
<<
Home , Gliomatosis cerebri, Gliosarcoma

NATIONAL INSTITUTE NCI-CONNECT Patient Engagement

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

NATIONAL CANCER INSTITUTE NCI-CONNECT Patient Engagement

Ways adult patients with rare (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, If Your Tumor and consultation with our If Your Tumor is symptoms, treatments, and neuro-oncology care team. quality isof life Stable to help us better Newly-Diagnosed Consultations are free. You will understand risk factors and You do not need treatment receive an accurate diagnosis or Recurrent improve patient care. or a second opinion. and treatment guidance. You need treatment or a second opinion.

Outcomes and Risk Project for Patients with Rare CNS A study for adults with central nervous system (CNS) cancers.

Objective National Cancer Institute (NCI) researchers are conducting a study of patients with rare CNSNatural cancers. History Study Clinical Trial This study will improve our understanding of outcomes andOnline risk factors related Study to the Clinical Take part in the natural history study, Participate in a rare CNS occurrence of rare and spine cancers. Participate in a web-based which includes genetic testing and Assessment tumor clinical trial to help questionnaire about your questionnaires to help us better Visit the NIH for an evaluation doctors determine whether personal and medical history, Research shows that certain risk factors may increase a understand brain and spine tumors. After and consultation with our new treatments are safe and person’s chances of developing cancer. Factors can include symptoms, treatments, and exposure to chemicals or other substances, and personal you are accepted on a study, treatments, neuro-oncology care team. effective and work better and family medical history. quality of life to help us better tests, and other services at the NIH are free. Consultations are free. You will than current treatments. What the study involves: understand risk factors and receive an accurate diagnosis improve patient care. • Fill out an enrollmentNCI Digital and consent form and treatment guidance. • Complete aStyle web-based Guide survey • Mail a saliva sample for genetic testing December 2019 You can participate if you: Tumor Types Include:

• Are age 18 or older • Atypical Teratoid Rhabdoid Tumor (ATRT)

• Are diagnosedU.S. with Department a rare brain of Health or spinal& Human cord Services tumor | National Institutes• of HealthChoroid Plexus Tumors (Carcinoma, Papilloma, Atypical Papilloma) • • You can participate in this study from home. • or Primary CNS It does not require a visit to NIH. It is not a treatment trial. It is a research study. • • (High Grade) • Midline or Brainstem Questions? • • Pineal Region Tumors Contact us at (240) 760-6010 or (Pineoblastoma, Pineocytoma, PTID, PTPR) [email protected] • Pleomorphic Xanthoastrocytoma (PXA) and Anaplastic Pleomorphic Xanthoastrocytoma (APXA) Follow-up Care cancer.gov/nci-connect • 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 Natural History Study best care during and after treatment. Clinical Trial Take part in the natural history study, Participate in a rare CNS which includes genetic testing and tumor clinical trial to help questionnaires to help us better doctors determine whether understand brain and spine tumors. After new treatments are safe and you are acceptedLearn on a study, more treatments, at: effective and work better tests, and other servicescancer.gov/nci-connect at the NIH are free. than current treatments. Contact us: [email protected] | (240) 760-6530 Share with others to engage patients in NCI-CONNECT. cancer.gov/nci-connect

Follow-up Care Our neuro-oncology care 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: [email protected] | (240) 760-6530 Share with others to engage patients in NCI-CONNECT. cancer.gov/nci-connect