Common Questions from Patients and Advocates
If you are supporting someone with a traumatic brain injury, thank you! The world needs more people like you.
Traumatic brain injuries affect each individual differently. It can be difficult to figure out the best ways to help yourself or your loved one. Here are some common questions we receive from patients and patient advocates like you.
Can I fill out the TBI Survey on behalf of someone else?
To be eligible for the registry, the individual must be at least 18 years old and be able to give consent to be contacted. You cannot consent or take the survey without your loved one's knowledge or on his/her behalf. You can, however, be there to help complete the survey.
How long does the TBI Survey take to complete?
The TBI Survey is 10 pages and takes about 30 minutes to complete online. Patients can save their answers and return later to finish.
What do we need to prepare for the TBI Survey?
Other than the patient's consent, all you need to gather for the survey is the date of the TBI injury and a list of all current medications the TBI survivor is taking.
After the TBI Survey is complete, will people automatically be enrolled in a clinical trial?
No. A patient who submits a TBI Survey will be added to UCSF's TBI Research Studies Registry. If the patient is matched with a study, we will let him/her know, and then s/he can decide whether or not to participate. Every new participant in the registry is a powerful call to the research community for more TBI research studies and accelerated treatments.
Where can I learn more about TBI?
We encourage you and your loved one to talk to your doctor or other healthcare provider about any medical questions. Here are some additional TBI resources to review:
The Brain Injury Association of America (BIAA): The BIAA provides information, education, and support to people currently living with a traumatic brain injury and their families.
BrainLine: BrainLine is a national multimedia project that offers information and resources about preventing, treating, and living with TBI.
Brain Trauma Foundation: BTF is dedicated to improving the outcome of a traumatic brain injury by developing best practice guidelines, conducting clinical research, and educating medical personnel.
Note: These links are provided for informational use only and their inclusion does not imply any endorsement of this registry by these organizations or by UCSF.
