OUR CURRENT PROJECT
DUE TO THE RARITY OF THE DISEASE, ONLY A MULTICENTER APPROACH IS FEASIBLE
David Liuzzo via Wikimedia Commons (CC 2.0)
10 different clinics participate in our project.
How should future therapies and clinical trials be designed?
How do MSA and M. Parkinson patients dream?
Elicitation of clinical data of MSA and Parkinson patients.
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 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).
WHAT DO WE WANT TO ACCOMPLISH WITH OUR RESEARCH?
YAMSA e. V. PRESENTED THEIR PROJECT AT THE ALPHA-SYNUCLEIN-CONFERENCE IN ATHENS 2017
OUR FUTURE PROJECTS