What We Do
What We Do
Put simply, we look to uncover the connection between brain inflammation and mental health.
We provide patients with a place to tell their story to both researchers and clinicians from their real-world experience. We look to address the lack of longitudinal studies that investigate the natural history of neuroinflammatory syndromes. We search for the underlying causes of mental health symptoms that can often present in people affected by autoimmune diseases.
Patients and their families can actively participate in the direction of research, and use it themselves to collect and organize their own data for disease management and discussions with their doctor. And by breaking down the barriers to participation, the project aims to increase patient involvement, inclusion and diversity.
It’s time for a new patient-centered approach. To understand brain inflammation and mental health, researchers need three things: statistics, samples and stories. Quantitative data point to scale and prevalence, but don’t map the connections between different conditions and symptoms. Blood testing and other bio-samples describe the biological landscape, but don’t capture the reality of the patient’s daily life. Patient insights seem to be the missing link. By combining all three, researchers can listen to patients – literally and biochemically – and begin to see the patterns that have eluded the clinical community for so long.
The Brain Inflammation Collaborative works to inspire these connections that are necessary to making strides in understanding how mental health symptoms impact our overall community. The need for patients, clinicians, and researchers to come together to learn from one another’s experiences is essential.
Collaboration, coordination, and communication.
We want to simplify and revolutionize how researchers and clinicians work to find the answers patients deserve. With free access to large-scale, high-quality patient data, the platform supports collaborative research to accelerate advancements in diagnosis and treatment. It’s a one-stop-shop for the entire research pathway, from study design, data collection and aggregation, data analysis and publication writing – for researchers and clinicians alike.
The Brain Inflammation Collaborative was created when the paths of three women with overlapping ideas and ambitions crossed in late 2021. We knew that brain inflammation in some people was triggering common mental health symptoms such as depression, anxiety, OCD, panic attacks and behavior changes. Or even presenting as other serious illnesses, such as anorexia. Our goal soon became to assemble the largest data and bio-sample resource available to look at the bigger picture of brain inflammation, mental health symptoms, and overlapping illnesses and conditions that brain inflammation often accompanies.
It is our belief that patient-donated data is the key to understanding the complexities of brain inflammation and will enable clinicians and researchers to develop additional treatment and prevention options. We are ready to push discussion and research around the common threads surrounding inflammation driven mental health.