One of the most common questions we hear from patients, families, doctors, and researchers is, “How many people in the world have TBRS?” Count Me In for TBRS aims to provide an answer!
Count Me in for TBRS is our Contact Registry, which collects contact and demographic information from diagnosed individuals and families.
By gathering information from families, we can more accurately estimate how many people worldwide have TBRS. We can also provide researchers with more specific data, such as how many people have TBRS in a certain country, or what races or ethnicities are represented in our community. The contact information also allows the TBRS Community to contact families in the event of clinical trials if they so choose.
No personally identifiable information will be shared with outside parties (clinicians, researchers, pharma, etc.) without the family’s permission. Count Me In for TBRS also allows families to choose how they would like their information used. For instance, if a family does not want to share their location, they are not required to. Additionally, if a family does not wish to be contacted they can choose this option.
Participate in Count Me In for TBRS to help us understand how many families are affected worldwide. Participation only takes a few minutes, and it helps us support families and further research on TBRS! Click here to participate!
