Table 1. Categories and descriptions of REDCap database forms.
| Name of Data-entry form: | Type of data collected: |
|---|---|
| Patient Information | Patient names, physician names, and primary illness diagnosis (reasons for DBS) |
| Demographics | Gender, age, ethnicity, educational background, and marital status |
| PD Features and Diagnosis | Date of onset of motor symptoms, site of onset, medication usage, and presence of other symptoms related to PD |
| PDQ-39 | Patient self-assessment of PD symptom severity pertaining to: mobility, daily living, emotional status, stigma, social support, cognitive impairment, communication, and bodily discomfort |
| MDS UPDRS | Investigator-rated assessment of cognitive and emotional symptoms, motor function, and severity of dyskinesia |
| Quick Inventory of Depressive Symptomatology (QIDS) | Patient self-assessment of mood, appetite and sleep |
| Enhanced Speech and Swallowing Evaluation | ENT-rated degree of speech and swallowing impairment. |
| Neuropsychology | Neuropsychology-rated degree of cognitive and emotional impairment. |
| MINI-BEST | Physical Therapy-assessed rating of patient balance and mobility |
| TWSTRS | Investigator-rated assessment of torticollis severity, including both pain and disability parameters |
| Burke-Fahn-Marsden Dystonia Scale | Investigator-rated assessment of dystonia type and severity |
| Fahn-Tolosa-Marin Tremor Rating Scale | Investigator-rated assessment of tremor in limbs, head, and trunk; also assesses handwriting, drawing, and water-pouring |
| Global Surgical Outcomes | Display of surgical results, possible lead implantation complications, and clinical impression rating by both physician and patient |
| Mobility Lab | Gait and balance assessment via APDM motion-tracking device |
| Operative Record | Surgical notes regarding target site for the lead, imaging modality usage, and MER recording details. |
| Video Completion | A “yes or no” placeholder indicating whether or not the patient’s assessment visit was recorded at that visit |
PDQ-39 = Parkinson Disease Questionaire-39, MINI-BEST = Mini-Balance Evaluation Systems Test, TWSTRS = Toronto Western Spasmodic Torticollis Rating Scale.