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
Priv.-Doz. Dr. Florin Gandor
Dr. Florin Gandor works as a senior physician and neurologist in Beelitz and supports our projects there.
Dr. Kevin Peikert
Dr. Kevin Peikert works as a physician at the neurological clinic at the university hospital in Rostock. He is a co-founder of YAMSA e.V. and supports our project there.
Dr. Michael Fleischer
Dr. Michael Fleischer works as a physician at the university hospital Duisburg-Essen and supports our project there.
Priv-Doz. Dr. Christoph van Riesen
Priv.-Doz. Dr. Christoph van Riesen is a senior physician and leads the outpatient clinic for Parkinson's Disease, movement disorders and deep brain stimulation in Goettingen-Kassel. He supports our project there.
Dr. Johanna Nieweler
Dr. Johanna Nieweler works as a physician. She supports our project in Göttingen.
Professor Dr. Markus Weiler
Professor Dr. Markus Weiler works as a senior physician at the neurological clinic which is part of the university hospital Heidelberg and supports our project there.
Priv.-Doz. Dr. Heike Jacobi
Dr. Heike Jacobi works as a senior physician at the neurological clinic which is part ot the university hospital Heidelberg and supports our project there.
Professor Dr. Tino Prell
Professor Dr. Tino Prell is director of the clinic for geriatrics at the university hospital Halle. Before, he was senior physician at the neurological clinical of the university hospital Jena.
Professor Dr. Joseph Claßen
Professor Dr. med. Joseph Claßen is head of the neurological clinic which is part ot the university hospital Leipzig and supports our project there.
Dr. Jost-Julian Rumpf
Dr. med. Jost-Julian Rumpf works as a senior physician at the neurological clinic which is part ot the university hospital Leipzig and supports our project there.
Professor Dr. Tobias Warnecke
Professor Dr. Tobias Warnecke is director of the neurology clinic in Osnabrück. He worked as a senior physician at the neurological clinic of the university hospital Münster and head of the Parkinson-syndrome and movement disorders division. He and his team support YAMSA in Münster and Osnabrück.
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© Young Alliance Against Multiple System Atrophy, YAMSA 2020
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