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. This study is now completed and published. Everyone can check the results for free: https://www.nature.com/articles/s41531-024-00764-5.

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.

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).

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.