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 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 understanding neurological diseases, finding better treatments and eventually cures.
- Tracking patterns of patient performance relative to their medications, deep brain stimulation, rehab therapies or other treatments and conditions. This leads to many new research projects and a “data mindset” within the clinical care team.
- A large clinical/research database can be linked to genetic information and tissue and will hasten new discoveries.
- Jump starting recruitment efforts for studies by providing lists of candidates.
- The data can help us to understand difference between patients, groups of patients, and diseases.
- Some research questions may take hundreds or thousands of patients to answer with a proper statistical analysis.
Data gathered so far
Over 20,000 patients have joined our database – over 7,500 of those have idiopathic Parkinson’s disease and over 2,000 have dystonia.
Database Team
| Name | Role | |
|---|---|---|
 | Nikolaus McFarland M.D., Ph.D. | PI, INFORM Database |
 | Chuck Jacobson, BS | Manager, Fixel Institute Data Lab |
 | Michael “Buck” Buchholz, MA | Data Manager |
 | Shafina Samraj, BS | Consenting Coordinator |
 | Sean Hamilton | Data Management Assistant |
 | Hannah Ciupe | Data Lab Assistant |
| Camila Ruiz | Data Lab Assistant | |
 | Andrea Villamizar | Consenting Assistant |
Staff Alumni
- Athan Bonavita
- Cecilia Cardenas
- Jazmyn Coronado
- Stephen Wadsworth
- Barbara Balsamo
- Linfang Yang
- Pam Deane
- Shivangi Patel
- Brett Winter
- Emma Leone
- Anuj Desai
- and many more …
Faculty Contributing Data and/or expertise
| Name | Department | |
|---|---|---|
| Leonardo Almeida, MD | Neurology | |
| Melissa Armstrong, MD | Neurology | |
| Matthew Burns, M.D. | Neurology | |
| Christopher Hess, MD | Neurology | |
| Irene Malaty, MD | Neurology | |
| Nikolaus McFarland, MD, PhD | Neurology | |
| Michael S. Okun, MD | Neurology | |
| Bhavana Patel, MD | Neurology | |
| Gregory M Pontone MD, MHS | Neurology | |
| Ashley Rawls, MD | Neurology |
|
| Aparna Shukla, MD | Neurology | |
| Sub Subramony, M.D. | Neurology | |
| Joshua Wong, MD | Neurology | |
| Dawn Bowers, PhD, ABBP-CN | Neuropsychology | |
| Catherine Price, PhD, ABBP-CN | Neuropsychology | |
| Breton Asken, PhD, ATC | Neuropsychology | |
| Erin Trifillio, PhD | Neuropsychology | |
| Shellie-Anne Levy, PhD | Neuropsychology | |
| Kelly D. Foote, MD | Neurosurgery | |
| Frank Bova, PhD | Neurosurgery | |
| Justin Hilliard, MD | Neurosurgery | |
| Heather Simpson, OTD, MOT, OTR/L | Occupational Therapy | |
| Nicole Tester, PhD, MOT, OTRL | Occupational Therapy | |
| Lisa Warren, MHS, OTR/L | Occupational Therapy | |
| Alison Kraus, PT, DPT, NCS | Physical Therapy | |
| Karen Hegland, PhD | Speech, Language, and Hearing Sciences | |
| Nicole Herndon, PhD | Speech, Language, and Hearing Sciences | |
| Chris Hass, PhD | Applied Physiology and Kinesiology | |
| David Vaillancourt, PhD | Applied Physiology and Kinesiology | |
| Samuel Wu, PhD | Biostatistics |