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 18,000 patients have joined our database and over 6,000 of those have idiopathic Parkinson’s disease.

Database Team

NameRole
Dr. McFarlandNikolaus McFarland M.D., Ph.D.PI, INFORM Database
Photo of Chuck JacobsonChuck Jacobson, BSData Manager
Photo of Linfang YangLinfang Yang, MSDeputy Data Manager
Photo of Cecilia CardenasCecilia CardenasData Management Assistant
Photo of Pamela DeanePamela Deane, BSData Management Assistant
Photo of Brett WinterBrett WinterData Lab Assistant
Stephen WadsworthStephen WadsworthData Lab Assistant
Shafina Samraj, BSConsents patients
 

Faculty Contributing Data and/or expertise

NameDepartment
Melissa Armstrong, MDNeurology
Matthew Burns, M.D.Neurology
Shannon Chiu, M.D.Neurology
Christopher Hess, MDNeurology
Irene Malaty, MDNeurology
Nikolaus McFarland, MD, PhDNeurology
Michael S. Okun, MDNeurology
Bhavana Patel, MDNeurology
Addie Patterson, DONeurology
Adolfo Ramirez-Zamora, MDNeurology
Aparna Shukla, MDNeurology
Sub Subramony, M.D.Neurology
Dawn Bowers, PhD, ABBP-CNNeuropsychology
Catherine Price, PhD, ABBP-CN Neuropsychology
Breton Asken, PhD, ATCNeuropsychology
Kelly D. Foote, MDNeurosurgery
Frank Bova, PhDNeurosurgery
Heather Simpson, OTD, MOT, OTR/LOccupational Therapy
Nicole Tester, PhD, MOT, OTRLOccupational Therapy
Lisa Warren, MHS, OTR/LOccupational Therapy
Alison Kraus, PT, DPT, NCSPhysical Therapy
Karen Hegland, PhDSpeech, Language, and Hearing Sciences
Nicole Herndon, PhDSpeech, Language, and Hearing Sciences
Chris Hass, PhDApplied Physiology and Kinesiology
David Vaillancourt, PhDApplied Physiology and Kinesiology
Samuel Wu, PhDBiostatistics