Driven to fuel scientific advancement.
Passionate about inspiring hope.
Committed to partnership.
Our Core Values
Brain Inflammation Collaborative is dedicated to fueling scientific advancement and hope for all who are impacted by neuroinflammation through research, awareness, advocacy, and partnership.
We support people who are affected by brain inflammation but are often not included in clinical research or trials. We value their health, quality of life, and happiness. We believe better clinical research is key to accessing accurate diagnoses, effective treatments, and quality care for everyone who needs them.
We value patients as partners and leaders, not just participants.
We understand that the barriers to accomplishing these goals are systemic and complex. We believe better research can only be achieved by operating differently.
We prioritize accessibility, transparency, and cultural humility in everything we do. Better processes inform better research.
Better research informs better diagnosis, treatment, and care for all.
We value the experiences and perspectives of people living with chronic health conditions.
We recognize experience as expertise, valuing feedback from people participating in our studies as partners and collaborators.
We advocate for people who need to be accurately diagnosed and are suffering with brain inflammation symptoms. We know that many are not taken seriously or have mental health symptoms that don’t respond to typical treatments, like antidepressant medications.
We care about people who have been neglected, misrepresented, and/or misdiagnosed in healthcare or clinical research spaces.
We build processes, tools, and protocols designed to meet people where they are and include them in clinical research; including groups often excluded such as:
- Children, teens, and adults of all ages
- People who live in rural areas with limited access to healthcare and research
- People of all genders, ethnicities, cultural backgrounds, and abilities
- People with varying levels of health literacy
- People with varying levels of life quality
- People impacted by various health conditions associated with inflammation that impacts body, brain, and nerves such as autoimmune illnesses, Long Covid, and long-term medical conditions triggered by an infection or illness, among others
- People with a mental health diagnosis and chronic illness whose mental health symptoms could be caused by illness-induced inflammation, such as people with treatment-resistant depression or anxiety.
We prioritize transparency, clear communication, accessibility, and cultural humility in how we engage with patients and community.
We recognize that impact is greater than intent. We aim to communicate, educate, and collaborate in a way that encourages dialogue, especially when we miss the mark. Ensuring our protocols, studies, and practices are capturing data accurately and in a way that works for patients isn’t just about research goals. It’s about making sure that our work is having the intended impact, and changing course if not.
- We strive to meet people where they are, reaching out to people with many different experiences and abilities.
- We prioritize plain language and avoid technical, medical, and scientific jargon as much as possible.
- We are committed to patient-led research practices, leveraging a team of patient advisors who are members of the populations we serve
- We engage with our partners and community to collect feedback on our work and practices.
- We develop tools, processes, and outputs that empower patients and support them in their own unique health journey.
We believe better clinical research is the key to a future in which getting the right diagnosis, the best treatment, and timely care isn’t complicated.
unhide®, our unique digital health platform, provides patients and caregivers with essential health insights and helps researchers access the data they need. unhide® collects real-world, patient-centered clinical research data directly from patients, creating immediate value for patients and researchers alike.
We empower patients with detailed reports, helping them track their own health conditions and symptoms, informing them ahead of visits with their healthcare providers.
We use research methods that fill gaps in existing research, validate patient experiences, and improve treatment options and quality of life for people impacted by brain inflammation.
We prioritize research practices that are solutions-focused, aiming to make an impact on patients’ health and quality of life as quickly as possible. They’ve waited too long already.
We lean into challenges that often make clinical research on chronic health conditions too difficult for many researchers. This includes:
- Protocol development
- Meeting complex regulatory requirements, which are especially difficult to meet when a study includes children and teens.
- Recruiting participants
- Data cleaning and analysis
- Getting findings published
