Seeking a Second Opinion
The CERN Foundation wants to help you find an expert neuro-oncology team that specializes in treating ependymoma.
Referring people with ependymoma to centers who have a greater understanding of this disease and connecting patients to ongoing research efforts is a goal of the CERN Foundation to improve patient outcomes.
There are many factors to consider when selecting your center for care. These can include the distance from your home, insurance coverage, treatment options, physician expertise, and available clinical trials to name a few. All factors should be considered when deciding the best center for you. Keep in mind, you can receive care at multiple centers. It is not uncommon to have surgery at one center, followed by treatment at another facility. For optimal care, you may go to two (or more) centers. You can receive expert guidance at one center and receive care at a center closer to home. This requires physicians to communicate and work together for the best interest of the patient. No choice is wrong when navigating this difficult experience.
Your medical team will partner with you to make the best choices for you and your family. It is important to discuss and define your family goals during this process. What works for some families does not work for others. It is ok to protect your wishes and make sure to openly communicate your plan with your care partners and medical team.
The CERN Foundation strongly encourages you to seek out a second opinion when faced with an ependymoma diagnosis or recurrence. Since this disease is rare, we feel it benefits you to seek counsel at an institution that is familiar with the disease. This can impact surgical outcomes, proper diagnostic testing, and navigating best treatment options to name a few.
When you are selecting a medical center for care or second opinion, we suggest looking for:
- Institutions with a dedicated neuro-oncology program. This means there is a team of doctors who work together to form your treatment plan including a neuro-oncologist, neurosurgeon, neuropathologist, and neuroradiologist that participate in a tumor board.
- Clinicians that are willing to collaborate and communicate with others members of your medical team
- Clinicians that have experience or specialize in treating ependymoma
- Clinicians that are actively involved in ongoing ependymoma research activities
- Clinicians that are involved in professional neuro-oncology consortiums and groups
Here are some suggested questions to ask your doctor about their experience.
Recommended Cancer Centers
The CERN Foundation supports ependymoma research at some of the world’s most respected cancer centers.
Historically, the CERN Foundation consisted of a collaborative network, which included scientists and clinicians who specialize in treating and researching ependymoma. The clinicians came from the top research hospitals from around the world, each with his or her unique expertise.
The BTTC is a network of institutions, led by the National Cancer Institute, who are committed to discovering new and effective therapies for the treatment of adult patients with ependymoma.
These experts in childhood cancer are available for children and families at children’s hospitals, university medical centers and cancer centers throughout the United States and Canada, and at a growing number of international sites.
NCI-Designated Cancer Centers deliver cutting-edge cancer treatments to patients in communities across the United States. Find a center near you and learn about its specific research capabilities, programs, and initiatives.
PBTC's mission is to contribute rapidly and effectively to the understanding and cure of pediatric brain tumors through the conduct of multi-center, multidisciplinary, innovative studies with designs and analyses based on uniformly high quality statistical science. PBTC was established in 1999 and consists of 15 academic centers.
The teams at each of PNOC’s member hospitals are made up of specialists in different areas of pediatric brain tumor treatment – such as oncology, neurosurgery, neuropsychology and radiation therapy – who combine their expertise to optimize care for each patient.
You can contact these medical facilities directly or fill out our referral form and we will be happy to connect you. Please contact us at any time during this process if we can help you navigate your options. We would be honored to help identify potential options at any point during your journey with this disease.