Purpose: The natural history of neurodegenerative diseases is a decline in mobility and worsening of balance. In most cases, this decline in function has been quantified by researchers using rating scales such as the UPDRS or the EDSS. However, these scales lack the sensitivity to specifically capture the progression of mobility loss and balance impairment. The use of more sensitive measures to generate natural history data is critical to clearly defining the benefits of rehabilitation interventions. The purpose of this presentation is to describe the implementation, benefit, and use of an on-line database tracking system by presenting the changes in clinical measures of balance, mobility, and balance confidence in persons with Parkinsonism over a one year period. Description: In order to allow data gathering and immediate data entry from two separate clinical research facilities, an on-line data base tracking system was created. Prior to initiation of this project, approval from the Health Sciences IRB was received. Participating therapists entered data through a data entry interface on a password protected website housed on a secure server. Data collected and recorded included disease specific information and performance on three specific clinical tests: the Berg Balance Scale (BBS), the Timed up and Go (TUG), and the Activities Specific Balance Confidence Scale (ABC). Data entered was encrypted and sent to populate a research database. As a pilot test of this tracking system, participants in on-going community based exercise program consented to participate. Data was collected at 3 month intervals over the course of 1 year for a total of 5 data points (0, 3, 6, 9, and 12 months). Summary of Use: As a group (n=14), persons with mild to moderate PD (Hoehn and Yahr 2–3)demonstrated no significant change in BBS, TUG, and ABC scores over the course of 1 year (P>.05, Friedman's ANOVA). The general patterns of change were mild increases in balance, mobility, and balance confidence upon the initiation of treatment (0–3 months), followed by a decline to the initial treatment levels at the one year follow-up. Of particular interest were the lack of changes observed in 2 tremor predominate persons with PD patients contrasted with the declines of 3 persons with akinetic rigid predominate PD. Importance to Members: The use of an on-line database tracking system can facilitate data gathering and entry from separate clinical facilities and result in greater efficiency (greater numbers of participants and less data loss) in tracking persons with neurodegenerative diseases. This type of tracking of natural history will contribute to a greater understanding of the prognosis of disease sub-types and to the acute and chronic effects of rehabilitation interventions.
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