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NCI-CONNECT Rare Brain & Spine Tumor Network

Outcomes and Risk Study for Patients with Rare Brain and Spine Tumors

Credit: NCI-CONNECT Staff

The research project intends to answer the one question that plagues most all patients: Why did this happen to me?

We are expanding the work of our successful Ependymoma Outcomes Surveys to improve our understanding of risk factors associated with the occurrence of rare central nervous system (CNS) tumors. Research has shown that certain risk factors may increase a person’s chances of developing cancer. Factors can include exposure to chemicals or other substances, personal and family medical history.

If you take part in this study, we will ask you to complete online surveys and submit a saliva sample that will be used for genetic testing to evaluate risk factors, and you may choose to submit medical records related to your Rare CNS tumor. The Rare CNS tumors Outcomes and Risk Study is designed for adults diagnosed with rare CNS tumors. We designed the instructions for participation to be as simple and straightforward as possible.

Efforts such as this would not be possible without the selfless contributions of patients like you.

Step-by-step registration instructions: 

  1. Click on the link for the Rare CNS Tumors Outcomes and Risk Enrollment Form.
  2. You will be sent a consent form through a secure email and the study coordinator will set up a time with you to go over the consent information, either over the telephone or using other NIH approved platforms, after you have had an opportunity to read the consent. Once you complete the consent form and send it back to the coordinator, you will be contacted with instructions to complete the Rare CNS Tumors Outcomes Survey and the Rare CNS Tumors Risk survey. You will be provided a unique link which you will use to complete the surveys.
  3. Once the surveys are completed, a medical records request form will be emailed to you if you want to submit your medical records, you will also be mailed a copy of your signed consent form for your files and a study kit to collect saliva for germline DNA. Germline DNA is the source of DNA for all other cells in the body. Your blood and tissue samples contain genes, which are made up of DNA (deoxyribonucleic acid) which serves as the "instruction book" for the cells that make up our bodies. Sequencing genome will determine the exact order of the base pairs (chemical letters) in your blood. Your sample(s) and survey responses will help us study how genes and suspected risk factors are associated with the occurrence of rare CNS tumors. Instructions on how to collect the sample and a self- addressed postage-paid padded envelope will be provided for you to return the sample back to us.
  4. Aggregate results of the surveys will be shared (anonymously on the NCI-CONNECT website and shared with our advocacy partners) when completed and by publication in peer-reviewed journals.

Please note: internet access is required for enrollment on the study and completion of all data collection forms. The Enrollment Form is housed at a separate and secured website called By clicking on either enrollment forms, you will be directed to this secure third-party site. The Rare CNS tumors Risk Survey and the Rare CNS tumors Outcomes Survey are housed on a seperate NIH secure server.

Rare CNS Tumors Outcomes and Risk Form Descriptions

  • Enrollment Form: brief survey designed to capture demographic data. Completion time is approximately five to 10 minutes.
  • Rare CNS Tumors Outcomes Survey: detailed surveys designed to capture data on treatment information and quality of life issues of rare CNS tumors patients. Participants will be contacted via email or physical mail once the completed enrollment form is received. Completion time is approximately 50 minutes for each participant. If you have any questions about this process, you are welcome to contact the study team at
  • Rare CNS Tumors Risk Survey: The survey will be completed only once by you or with the help of a proxy if physical limitations prevent you from completing the online forms via Scribe. For example, if you have visual or motor problems making it difficult for you to see the questionnaire or be able to manually use the computer to type your responses, a proxy can help you complete the survey. Questions include demographic information, personal medical history, family medical history and environmental exposures. This should take about 45-60 minutes. If you have any questions about this process, you are welcome to contact the study team at
  • Updated:

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