Participate in the Outcomes and Risk Project

The 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 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 an online survey and submit a saliva sample that will be used for genetic testing to evaluate for risk factors. The Rare CNS Tumors Outcomes and Risk study is designed for adults diagnosed with rare CNS tumors. A subsequent study will include pediatric participants and their families. We encourage you to take our Outcomes Survey. An update will be provided on the CERN website when this becomes available.

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 through a secure email and the project coordinator will set up a time with you to go over the consent information over the telephone 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 once completed, the Rare CNS Tumors Risk survey. You will be provided a unique identifying number which you will use to complete the study.
  3. Once the surveys are completed, you will be mailed a copy of your signed consent form for your files and a 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 survey will be shared (anonymously on the CERN Foundation website) 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, the Rare CNS Tumors Risk Survey are housed at a separate and secured website called By clicking on either enrollment forms, you will be directed to this secure third-party site.

Ependymoma 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 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 SurveyMonkey. Questions include demographic information, personal medical history, family medical history and environmental exposures. This should take about 52 minutes. If you have any questions about this process, you are welcome to contact Alvina Acquaye at 240-760-6430.
  • Rare CNS Tumors Outcomes Survey: The survey will be completed in addition to the Risk Project survey. The survey takes about 15-20 minutes to complete and covers your treatment history, symptoms, social and clinical information.

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