This project, whose full name is Outcomes and Unanswered questions Registry for DBS, will use the experiences and progress of patients like you to help medical science understand how to get the best from DBS.
OUR DBS is the initial project of the RAD-PD (Registry for the Advancement of DBS in Parkinson’s Disease). OUR DBS focuses on patient reported outcomes(PROs) utilizing smart devices like cell phones, pads, and computers to make it easier for patients report their progress through treatment and for doctors and scientists to use this information to advance DBS treatment.
Every six/twelve months you’ll receive an (email / letter) reminding you about your next study visit. To make your visits to the clinic more efficient (and shorter!), we would like you to try filling out some of the questionnaires ahead of time on line. We’ll have your answers available for your clinic visit so you can go over any questions you have with the Study Coordinator. The questions you’ll see “on line” are identical to the ones you would be asked in the clinic. If you have questions when you're filling out a questionnaire, or don't want to fill it out in advance, don't worry -- the study coordinator will ask you the questions at your next visit.
We wanted to give you a sense of how you are doing, but without setting up a “competition” among patients. You'll receive summaries of your progress as measured through the questionnaires you and your health care team completed. For each you’ll find your scores, how those scores compare to your last set of answers, and how your progress compares to other patients in our study. Notice that we didn’t say how your performance compares to other patients. We don’t want participants in the OUR DBS study to feel that they are doing better or worse than x% of patients. Instead, we’re interested – and we think you will be too– in how you are progressing over time.
All your information will be kept strictly confidential. Other than getting reports from us about how you’re doing, you will never hear from anyone connected with the study.