OUR CURRENT PROJECT
OUR SUPPORTED PROJECTS
Part 1: How should future therapies and clinical trials be designed? Patients' attitudes
Part 2: How do patients with MSA and Parkinson's dream?
Part 3: Characterising clinical features of patients with MSA and Parkinson's
For the analysis we need a comprehensive picture of the health state of our participants. We are collecting some data retrospectively from the patients' medical records. Among other things, we are checking for additional diseases, such as terminal cancer, which could potentially increase the suffering and the patients' willingness to take risks. Moreover, it is invaluable for us to have information about the cognitive state of our patients and to know in which stage of the disease they are.
Patients in a later stage of the disease, which may already be tied to a wheelchair, suffer more than patients which aren't physically impaired and are still able to take care of themselves. Moreover, we are collecting information about symptoms specific to MSA and Parkinson's to improve the characterisation of the disease burden, such as incontinence, impotence, orthostatic hypotension, REM sleep behavior disorder, slowing movement (bradykinesia), tremor and stiffness (rigor).
For all our projects: Our study database
For our digital, web-based collection of our questionnaires, we teamed up with secuTrial® to create a state of the art database. secuTrial® is a browser-based Good-Clinical-Practice EDC system for collection of patient data. As one of the first web-based systems of its kind, it was originally developed by the Kompetenznetzwerk Parkinson and belongs nowadays to the top 5 most used electronic database systems for clinical research in Europe.
DOCTORS SUPPORTING OUR PROJECT
OUR FUTURE PROJECTS