About the ProjectTBI Concussion & Brain Injury Survey

The ProjectTBI Concussion & Brain Injury Survey was created to better understand the long-term experiences of individuals living with concussion and traumatic brain injury (TBI).

Every year, millions of people experience brain injuries from accidents, sports, military service, falls, and other causes. While medical treatment often focuses on the immediate injury, far less information is collected about what happens afterward — the months and years of recovery that follow.

For many survivors, brain injury is not a single event. It is a long journey that can affect memory, concentration, emotional health, relationships, work, and everyday functioning.

ProjectTBI exists to document those experiences.

Through structured interviews and personal conversations with survivors, this project gathers information about how brain injuries impact people over time. The goal is to help create a clearer picture of recovery, ongoing symptoms, and the strategies survivors use to rebuild their lives.

Why This Project Exists

Traumatic brain injury is often described as an “invisible injury.”
Many symptoms cannot be seen from the outside, yet they can deeply affect daily life.

Survivors frequently report challenges such as:

• Memory and attention difficulties
• Chronic headaches or sensory sensitivity
• Sleep disturbances
• Mood or emotional changes
• Cognitive fatigue
• Difficulty returning to work or school

Despite how common these challenges are, survivors often feel that their experiences are poorly understood or rarely documented in a meaningful way.

ProjectTBI aims to help change that.

By collecting both structured survey data and personal stories, the project helps capture the real-world impact of brain injury beyond the initial diagnosis.

How the Interviews Work

Participants schedule a remote interview lasting approximately 45–60 minutes.

The interview includes two parts.

First, participants answer a structured survey based on concussion and brain injury research frameworks. These questions collect consistent information about the injury, symptoms, treatment, and recovery process.

Second, participants are invited to share their personal experience with brain injury. This may include how the injury occurred, what recovery has been like, and how life has changed since the trauma.

These conversations help provide context and human insight behind the data.

Who Can Participate

The survey is open to individuals who:

• Have experienced a concussion or traumatic brain injury
• Are currently living with ongoing symptoms or recovery challenges
• Experienced a brain injury in the past and want to share their experience
• Are caregivers or family members of someone with TBI

Participants may be at any stage of recovery, whether the injury occurred recently or many years ago.

Privacy and Participation

Participation in the ProjectTBI survey is completely voluntary.

Participants may skip any question or end the interview at any time.

Personal identifying information will not be shared publicly without permission. Stories may be shared anonymously in order to help educate others and raise awareness about brain injury recovery.

About ProjectTBI

ProjectTBI.org is an independent initiative focused on documenting the lived experiences of traumatic brain injury survivors.

The mission of ProjectTBI is to:

• Collect meaningful data about concussion and TBI recovery
• Document the real-world experiences of survivors
• Raise awareness about the long-term effects of brain injury
• Support education, advocacy, and future research

By participating in this survey, survivors contribute to a growing body of knowledge that can help improve understanding of brain injury and support others navigating similar challenges.

Every story shared helps move the conversation forward.