CERN FAQ From the Website

CERN FAQ From Inquiries From The Website

1. In 2004, a patient was diagnosed with an ependymoma. Subsequently, two years later, his spouse died of a glioblastoma multiforme. The inquiry received was whether or not the patient or their spouse could have been exposed to anything (a virus, radiology testing such as an x-ray) that may have caused them both to develop brain tumors?

We do not have any specific known risk factors for either ependymoma or glioblastoma. We do know that there is an increased incidence of brain tumors in nuclear industry workers, but no association known with dental x-rays. Although this seems like an unlikely coincidence, it would be very hard to figure out the cause in a single case.

2. Many patients and caregivers have inquired about clinical trials for the treatment of both adult and pediatric ependymomas. How can you find out more about clinical trials sponsored by the CERN Foundation?

The CERN Foundation is currently sponsoring three (3) clinical trials for the treatment of ependymoma. Two trials are for the treatment of ependymoma in adults and the one trial is for treatment of ependymoma in the pediatric population. The adult trials are currently open and accepting patients. The pediatric trial is currently closed because of complete accrual. Off note: We, the CERN Foundation Members, are researching the development of new treatments for ependymoma and hope to have additional trials opening in the near future. For more information on our current clinical trials, please visit the clinical trial portion of our website.

3. I am trying to find research articles regarding the treatment, cause and prognosis of ependymomas? Where can I find this information?

We suggest that you either visit the News and Research area of the CERN Foundation website (located at the bottom right of the homepage) which we update as we learn of new resources OR access articles through PubMed. PubMed is the most up-to-date resource for published research but please be aware that there is traditionally a 6-8 month lag time between the research submission and publication.

4. Am I, or is my child/spouse/friend a candidate for the clinical trials sponsored by the CERN Foundation?

While we want to help each and every patient find the best treatment option for ependymomas, we are not able to accept or deny patients for any clinical trials via website or telephone inquiries. If you are interested in joining one of our clinical trials, we will be happy to direct you to the most appropriate CERN medical facility participating in our trials for further evaluation. In order to best help patients during these evaluations we ask that you have any pertinent medical records, slides, radiology and labs available for your appointment or as per requested by the individual CERN affiliated medical institutions. Please note: We do not recommend that patients remove any pertinent medical information that may deter or prohibit their current treatment plan.

5. How can I find the most appropriate physician at MD Anderson for the treatment of “Myxopapillary Ependymoma?”

Patients and their caregivers can contact the MD Anderson Brain and Spine Center’s new patient office at 713-792-6600 to obtain an appointment to see a neurosurgical specialist in spinal cord tumors. If you would like further direction, we can try to direct you more specifically to a specific physician or team of physician’s experienced in your particular ependymoma-related medical issue.

6. I am a female in hopes of becoming pregnant in the future years and have been recommended treatment of both Cisplatin and Etoposide. After researching these chemotherapy agents, I have found that they have been shown to cause infertility in patients. Can you please advise me as to whether or not they would definitely cause infertility?

Because our CERN Foundation medical providers are not experts in fertility issues, we suggest that you seek counsel with an Obstetrics group with expertise in chemotherapy and its’ impact on fertility. These medical providers would be the most appropriate specialists to answer these questions.

7. I am interested in donating to the CERN Foundation and/or its’ affiliated physicians or medical institutions. Who should I contact?

Checks can be made payable to the CERN Foundation and sent attention to:

CERN Foundation Administrator 6450 Poe Avenue, Suite 201 Dayton, OH 45414

Please also include your name and telephone or e-mail address and so that we may send you a receipt of your donation for tax purposes and express our gratitude. You can also donate online.

8. While we’re sure it has been very difficult, we have received inquiries from patients and their caregivers regarding how to donate their own or their loved ones remains to research related specifically to ependymoma. Below are some options for these patients and their caregivers.

Often times a patient may request to donate their remains to their treating medical facility and/or treating medical provider. This can be done by requesting that your treating medical provider order an autopsy. Additionally, there are research organizations that offer this service. One such organization is called Biogift. For more information on Biogift, you may visit their website at www.biogift.org.

9. Multiple blood relatives in my family have been diagnosed with brain tumors. Could there be a genetic link?

There may be a connection. We would suggest that this person consider evaluation by a cancer genetics group.

10. I had an ependymal tumor removed from my spinal cord and am now a paraplegic. What can be done to repair the nerve damage?

Unfortunately we do not have anything that will repair spinal cord injury yet. However, we did suggest that you contact the Miami Project, which focuses on spinal cord injury and regeneration. Their website is www.themiamiproject.org.

11. Are there any possible hereditary links to ependymomas?

Ependymomas with a hereditary link are far rarer than those without a hereditary link. The tumors with a hereditary link are generally in families with ependymomas or other specific cancers in multiple family members. If you or the patient is concerned about a potential hereditary link, you may want to pursue consultation at one of the CERN Foundation medical institutions or elsewhere that they have expertise in research and treatment of ependymomas.

12. I live internationally and am interested in joining one of the clinical trials sponsored by the CERN Foundation. Do I have to seek treatment and care in the United States at one of the participating medical institutions, or can I be a part of the trial while remaining abroad?

International patients are certainly encouraged (when eligible) to partake in the clinical trials sponsored by the CERN Foundation. However the patient would have to be seen at a CERN Foundation affiliated medical institution , and then be willing to travel as needed. We are currently expanding the CERN Foundation to include medical institutions in Europe and Canada. As we grow as a foundation we hope to continue to expand internationally to other areas of the world. We will do our best to refer the name of a colleague oversees if possible.

13. General Inquiries such as the following:

- What is my prognosis? - Is it cancer? - Will my ependymoma recur? - What is the best treatment for ependymoma in adults? In children? - Is my current treatment regimen the best or most appropriate for my diagnosis?

Unfortunately, the CERN Foundation medical providers are not able to answer questions such as the ones listed above via e-mail, telephone or other written communication. However, if a patient is able to travel to one of the CERN Foundation affiliated medical institutions, after a thorough review of current and past medical information (including records, films, slides and other pertinent knowledge) and a physical exam, our team may be able to offer insight in to many of these questions and/or help to provide new treatment options.

14. Is there any evidence to support the role of chemotherapy in treating pediatric patients with ependymoma following radition therapy?

Currently, there is no hard evidence supporting the role of chemotherapy after radiation therapy in pediatric patients relative to improved survival rate.

15. How else can I help contribute to the knowledge of the CERN Foundation and its’ efforts in finding a cure and bettering the quality of life in patients with ependymoma?

We are currently running a research project called the Ependymoma Outcomes Survey that addresses and seeks to improve quality of life issues in adult patients with ependymomas. If you would like to be a part of this very important effort, please click here. If you would like to receive information via the U.S. Mail, please send an inquiry via our website or send a letter requesting the EO Survey to:

CERN Foundation Administrator Attn: EO Project Request 6450 Poe Avenue, Suite 201 Dayton, OH 45414

16. How can I share my story as a patient/caregiver/friend?

We love to receive words and stories of hope and inspiration! If you would like to share your experience or that of a loved one, please visit our website to submit a photo, your story and name (you can certainly share your story anonymously, too). Click here if you would like to submit your story. You can also send your story via the US e-mail to the following:

CERN Foundation Administrator Attn: CERN Inspiration Story 6450 Poe Avenue, Suite 201 Dayton, OH 45414

 The CERN Foundation welcomes questions about ependymoma and will do our best to answer quickly and honestly. Please contact us if you have any questions!