By. Mallory Bachmann
From a bold idea to a groundbreaking reality—INFORM has transformed research at the Norman Fixel Institute for Neurological Diseases. What began as a vision to bridge clinical care and research has now surpassed 20,000 unique patients, fueling discoveries, funding, and nearly 1,000 publications.
When Co-Founders and Directors Dr. Michael Okun and Dr. Kelly Foote arrived at the University of Florida, they envisioned a database where every patient seen in the clinic could opt in to also become a research participant, with data used to enhance care and drive research. It was Chuck Jacobson, now Clinical Data Research Manager, who joined the team and turned this vision into a reality.
This milestone has exceeded expectations, supporting the institute’s philosophy of multidisciplinary care.
“The database has been the glue that has driven true interdisciplinary care and research. It has fostered a model of care that has yielded many centers of excellence and hundreds of papers.” said Dr. Okun.
To ensure the integrity of the research, Fixel has a Data & Analysis Committee in place to advise researchers, particularly student researchers, on strengthening their methods and analysis.
Papers utilizing INFORM data include research on Essential Tremor after Deep Brain Stimulation, the cognitive-motor link in Parkinson’s Disease, and automated imaging differentiation in parkinsonism, among other impactful studies. Each of these contributions is helping to shape the future of neurological care.
Earlier this month, the Fixel staff, along with those who contributed to this achievement, celebrated over lunch and discussed the next steps for the growth of the INFORM database. Moving forward, the database will expand to include behavioral and cognitive disorders (such as Alzheimer’s and other dementias), building upon its initial focus on neurological movement disorders. The next phase will also incorporate neuromuscular disorders, including ALS, Traumatic Brain Injury, and Multiple Sclerosis.
As the INFORM database evolves, it will continue to bridge the gap between patient care and groundbreaking research. With new areas of focus, it further reinforces the Fixel Institute’s commitment to advancing knowledge and improving lives. Each milestone brings the institute closer to shaping the future of neurological care and offering hope to those affected by these conditions.