How to Enroll
Patients and their parents or guardians who wish to learn more about participating in the ETMR One Registry should contact our registry office.
This registry is a collection of clinical information from ETMR patients across the globe which includes their demographic data, treatments received, responses to therapy, imaging studies, and available tumor specimens. This information is being collected as a resource for physicians and researchers to improve our understanding of ETMR and develop better approaches to treatment and overall care of children with ETMR.
All patients of any age who currently have or have ever been diagnosed with ETMR are eligible to join in the registry.
The ETMR One Registry is a research study and participants are required to go through an informed consent process prior to joining the registry. This process has been established to ensure that all participants fully understand the processes and goals of the registry and how their information and specimens will be used in research. The informed consent process is outlined below:
- A registry staff member will arrange a date and time for a 30-minute phone call to discuss the details of the ETMR One Registry.
- Before the call, you will receive a copy of the informed consent document by email.
- After speaking with a member of the registry team about the registry protocol and receiving answers to your questions, you can then decide to enroll onto the ETMR One registry study. If you choose to enroll, you will sign and date the consent form and return the signed form to the registry office by email, fax or mail.
- Registry staff will then work with your child’s hospital to collect the medical information and any available specimens required for the registry.
If your child has passed away, their clinical information is valuable and can be used to help us learn more about ETMR. You can provide permission to include your child’s information in our registry by filling out a release form and returning it to the ETMR One registry research team.