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A National DBS Clinical Research Database

The National DBS Clinical Research Database aims to establish a participant-specific data collection system for Parkinson's disease. This national database will enable efficient and high-quality data collection via secure platforms, addressing challenges such as confidentiality, device usability, and internet connectivity. It offers various input methods suitable for caregivers, clinicians, and researchers, including tablets, laptops, and paper forms. Future plans include extensive testing and web-based reporting to ensure smooth operation and accessibility for diverse users.

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A National DBS Clinical Research Database

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  1. A National DBS Clinical Research Database The development of a participant-specific data collection system. Brain Stimulation Symposium8th NovemberCustoms House, 399 Queen Street, Brisbane

  2. Rationale for a national database

  3. A key component • Provide an efficient and high quality method to collect data (esp questionnaires), to enter data into a secure server and eventually to analyse data obtained from • Parkinson’s disease participants • Care givers • Clinicians/researchers

  4. Issues around data collection and storage • Devices • Internet connectivity • Confidentiality of data • Ease of use Make text bigger!

  5. Devices • iPad/Android • Windows Tablet • Windows Laptop

  6. Confidentiality of data • Microsoft Access • Windows script • Open SSL • Zip encryption • Cloud storage

  7. Ease of use • Includes on screen instructions • Using standard input controls • Large fonts and colours • Styluses • Testing

  8. Make wider& move away from edge of screen Question & fields closer together Make all text larger

  9. What’s next • Testing! • Web based reporting and administration • Choice of input for each participant • Tablet: stylus, on screen keyboard, touch screen • Laptop: mouse, keyboard, touch screen, trackpad • Paper & pen

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