You can decide to which extent you would like to participate in the study. Should you wish to participate, our clinical team will thoroughly inform you about the aspects of the study and you will be required to sign an Informed Consent Form. A participation only concerns research, not treatment. Of course, we will not prescribe or offer you any medication nor do we change the therapy given by your treating physician. Therefore no risk for treatment-related side-effects exists for the participants in our study’. If you decide to take part, you are still free to withdraw at any time and without giving a reason.
How often do I need to participate?
We invite patients to participate in a follow up examination once a year to get a detailed insight into the course of the disease. During this appointment we will perform neurological and neuropsychological examinations as well as sample collections like during your first visit. Please bring your diagnostic reports as well as current medication scheme to the visit. Healthy control subjects will only be examined every 4 years.
Are there any benefits?
You should not expect to directly benefit from this collection. The main reason you may want to participate is to help researchers find better treatments for neurodegenerative diseases, such as Parkinson’s disease, and to better understand their development. Therefore, there may be an indirect benefit when new therapies for these still incurable diseases emerge. There are no costs for you to donate your samples. You will also not be paid to donate your biological samples.
Will I receive any information in return?
While the ultimate goal of this collection is to support future research in the field of neurodegenerative diseases, there is a possibility that information will be discovered that may be of relevance to your personal healthcare. If this should happen, the researchers will inform the Principal Investigator of the collection who will evaluate the information and decide what to do, which may be to contact you through your doctor. Additionally, it is intended that the results of these studies will be published in medical and scientific journals.