For the Parents
There is no scarier news than being told your child has a brain tumor. When that tumor is ETMR, a rare, aggressive cancer with no standard treatment, things can seem hopeless.
We are here to change that.
ETMR One is an international registry and research platform for embryonal tumor with multilayer rosettes (ETMR) aiming to transform care and improve outcomes for children diagnosed with ETMR. Through a paradigm-shifting approach for studying rare cancers we are bringing together physicians and researchers from across the globe to develop newer and better treatments for ETMR.
The rarity of ETMR makes it very difficult to study the tumor and develop new treatment plans. Even the largest children’s hospitals in the world may only see a few cases over the course of several years. In order to learn more about ETMR it is imperative that doctors and researchers share information in a systematic and coordinated manner. Our registry protocol enables us to seamlessly gather important clinical information from ETMR cases from around the world. Each piece of patient data that we collect brings us one step closer to establishing a proven and effective treatment approach to ETMR.
Enrolling your child on a research study can feel intimidating.
“How will my child’s information be used?”
“Who will actually be performing the research?”
“Does the study team have my child’s best interest in mind?”
While the scope of this research trial is large, we have made it our goal to never lose site of the child behind the study number. Each child with ETMR is different and has their own medical needs. Instead of a rigid protocol, our consensus therapy was designed to adapt to and address the unique needs of each patient. Our Medical Advisory board is made up of experts in the fields of pediatric neuro-oncology, neurosurgery, and radiation oncology who review each registry case and make recommendations. This personalized approach ensures that the treatment administered follows a therapy plan specifically tailored for your child.
How You Can Help
As parents, you are our most important partners. By opening the door to your child’s information and donating precious tumor tissue, you are allowing our physicians and researchers to impact not only your child’s treatment, but improve the care for children with ETMR around the world. To find out more about how you and your child can participate in our registry, please click here.
How to Enroll