Our research

David Liuzzo via Wikimedia Commons (CC 2.0)

DUE TO THE RARITY OF THE DISEASE, ONLY A MULTICENTER APPROACH IS FEASIBLE

13 different clinics participate in our project.

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OUR CURRENT PROJECT

OUR SUPPORTED PROJECTS

Part 1: How should future therapies and clinical trials be designed? Patients' attitudes

Our current study comprehensively surveys patients with MSA and Parkinson's on how clinical trials and disease-modifying therapies for these diseases should be designed. In our questionnaire we are asking which side effects are particularly severe and which would be bearable.

Moreover, we are assessing the willingness of patients to take therapy-associated risks. We are specifically investigating whether the willingness to take risks correlates with the disease burden (assessed using the health-associated quality of life). Furthermore, our goal is to find out more about the general attitude of patients towards clinical trials and possible barriers that prevents them from participating.

Part 2: How do patients with MSA and Parkinson's dream?

 

We are investigating potentially burdensome, but so far not assessed, symptoms linked to the contents of the patients' dreams. For that purpose, we use a 'dream questionnaire'. The majority of MSA patients suffer from a REM-Sleep-Behaviour-Disorder. Moreover, 50% of all patients with Parkinson's suffer from this disorder.

 

The disorder is characterised by a loss of muscle tension during the REM-sleep. This leads to the patients living out their often vivid and sometimes even violent dreams. We hypothesise that these brutal and possibly disturbing dreams increase the disease burden of patients with MSA and Parkinson's.

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

BEELITZ

Dr. Florin Gandor

Dr. Florin Gandor studied medicine at the Humboldt-University/Charité in Berlin and did his doctorate in the field of experimental neurology about neuroprotection in cerebral ischemia. After working at the emergency hospital in Berlin he started his work as a research fellow at St. Vincent's Hospital in Sydney, Australia, where he specialised in the field of movement disorders.

Since 2011 he is working in Beelitz at the clinic for Movement disorders/Parkinson and is coordinator for clinical studies there. Dr. Gandor worked on several clinical studies regarding atypical Parkinson's diseases and is currently working on laryngopharyngeal symptoms. He also works as a lecturer at the Otto-von-Guericke-University in Magdeburg, Germany.

DRESDEN

Dr. Kevin Peikert

Dr. Kevin Peikert works as an assistant physician at the neurological clinic at the university hospital Carl Gustav Carus in Dresden. He is co-founder of YAMSA e.V. and supports our project there.

ESSEN

Dr. Michael Fleischer

Dr. Michael Fleischer is assistant physician at the university hospital Duisburg-Essen and supports our project there.

Goettingen

Dr. Christoph van Riese

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 an assistant physician. She supports our project in Göttingen.

HEIDELBERG

Priv.-Doz. Dr. Markus Weiler

Priv.-Doz. 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. 

Dr. Heike Jacobi

Dr. Heike Jacobi works as a neurologist at the neurological clinic which is part ot the university hospital Heidelberg and supports our project there. 

JENA

Dr. Tino Prell

Dr. Tino Prell is a senior physician at the university hospital Jena and head of the surgery for movement disorders. He supports our project in Jena.

LEIPZIG

Professor Dr. med. 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. 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. 

MÜNSTER

Professor Dr. Tobias Warnecke

Herr Professor Dr. Tobias Warnecke is 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.

OUR FUTURE PROJECTS

In accordance to our statues, we want to support and carry out additional multi-centric MSA research projects - our current project sets the foundation and the starting point of this. With our current study we are already supporting  the participating hospitals by creating a registry of patients with

MSA who are interested in participating in future studies concerning MSA. This could lead to a possible permanent follow-up project: A nationwide patient registry of German-speaking MSA  patients.

OUR PUBLICATIONS

We are expecting first results in December 2020. Nevertheless, we presented our project and the YAMSA foundation at various national and international conferences, for example at the "6. International MSA Congress" in New York City in March 2018:

 

Tabea Barthel*, Alexander Maximilian Bernhardt*, Lioba Kahmann*, Emre Kocakavuk*, Eliana Nachman*, Marc Oeller*, Kevin Peikert*, Malte Roderigo*, Andreas Rossmann*, Jeremy Schmidt*, Isabel Weigelt*, Lea Olivia Wilhelm*, Armin Giese, Wolfgang Hermann Oertel (03/2018): Assessing the Willingness of Multiple System Atrophy Patients to Take Risks in Clinical Trials. 6th International MSA Congress, New York City, 1. – 2. März 2018.

 

* contributed equally


The abstract was published in  Clinical Autonomic Research (2018) 28:142.

 

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