Clinical Research Database

What we collect

Patients who see UF Health physicians at the Fixel Institute’s Movement Disorders clinic have the option to allow us to track their condition in our central database. The information is gathered in clinic and used for treatment purposes. The data includes rating scales for specific disorders, medications, and a variety of quality of life scales (QOLs) and mood scales. We can track patients very carefully for subtle changes in motor or non-motor function. Also, we can use this information for research purposes such as recruitment for studies or projects to study characteristics of a specific movement disorder.

What we use it for

The information kept in our database is being used for several purposes, all aimed at finding better treatments and eventually cures.

• Tracking patterns of patient performance relative to their medications, deep brain stimulation or other treatments and conditions. This helps not only clinically, but also leads to many new research projects.
• The formation of a large clinical/research database can be linked to genetic information and tissue, and will hasten new discoveries.
• The data can help us to understand difference between patients, groups of patients, and diseases.
• The data repository allows us the ability to answer questions that are important, but statistically may take hundreds or thousands of patients to answer.

Data gathered so far

Over 19,000 patients have joined our database and over 7,000 of those have idiopathic Parkinson’s disease.

Database Team

	Name	Role
	Nikolaus McFarland M.D., Ph.D.	PI, INFORM Database
	Chuck Jacobson, BS	Data Manager
	Cecilia Cardenas	Data Management Assistant
	Jazmyn Coronado, BS	Data Lab Assistant
	Athan Bonavita	Data Lab Assistant
	Shafina Samraj, BS	Consenting Coordinator

Faculty Contributing Data and/or expertise