If you agree to take part in this collection, you will be asked to:
- Visit a neurologist and undergo neurological examination and perform neuropsychological tests (incl. questionnaires and self-declared responses): : Here we investigate your motion and test your attention, memory, vision, language and sense of smell. Also your quality of life is very important: therefore we ask you also about your mood, your daily activities and sleeping habits as well as your medical history. It is not necessary to prepare for these tests. The two to four hours will pass quickly as we have tried to create a varied test series. Coffee and small breaks can also be included.
- Donate blood: On your first day of examination in the clinic, we will take some vials of blood from you. From this we analyse in the future for instance your genetic material, called DNA, as well as the copy of the genetic material, called RNA. Also analyses of classical laboratory parameters such as cholesterol etc. are possible.
- Donate urine: On your first visit to the clinic, we will ask you for a small urine sample. Our researchers are investigating the metabolic products of the urine in a detailed manner and compare them between patients and healthy controls.
- Donate saliva: On your first day of examination in the clinic, we will ask you to donate saliva. Your saliva contains molecules that are tested in the laboratory for potential biomarkers.
- allow access to your medical record information.
Depending on your health condition and other tests you may have to do for your medical care, you may be asked to contribute the following materials, if you agree:
- Skin biopsy: We will take a small skin sample during a biopsy in which a superficial portion of skin is removed, for example in the area of the thigh, under local anaesthesia. Only a small superficial wound, comparable to a small graze, remains. We will treat it with an adhesive strip, such that it heals within a few days. From your skin cells we can establish a cell culture in the laboratory, from which we can recreate nerve cells. These are particularly well suited for research as a good model for Parkinson's disease. We can herein investigate the influence of genetic risk factors.
- Stool: More than a thousand different types of bacteria, which together weigh about one and a half kilograms, live in our gut. They are partly excreted through our stool. To test the hypothesis that the composition of bacteria in the gut may contribute to Parkinson's disease, our researchers are investigating whether different types of bacteria are found in patients and control subjects. To this end, the stool sample is genetically tested to identify the different types of bacteria.
- Additional colorectal tissue biopsy (only in the context of a colonoscopy required for a medical purpose);
- Analysis of cerebrospinal fluid: : If wanted, patients can also donate cerebrospinal fluid. Similarly to an injection into a muscle, a needle is placed in the lumbar area, through which a few millilitres of cerebrospinal fluid can be collected. Our researchers examine metabolic products in the cerebrospinal fluid in great detail and compare them between patients and healthy controls. Since the cerebrospinal fluid is in contact with the brain, we can draw conclusions about metabolic changes in the brain from these analyses.
- Detailed imaging of the brain: As part of the Parkinson’s Disease Study, we evaluate already existing pictures of the head (scans), which were made as part of the diagnosis.
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 are a hospital patient, you will have samples collected for medical reasons, e.g. for diagnosis. Whenever possible, samples for research will be collected together with the samples for your routine medical care. If you agree to donate specimens, they will be collected and stored at the IBBL (Integrated BioBank of Luxembourg).
Will I be contacted to provide further information?
As new scientific discoveries are constantly being made, it may be important to collect additional information about health or lifestyle of participants that was not considered to be of importance when the collection was designed. A possible scenario, for example, is that it could be suggested in an independent study that a certain genetic modification is only associated with a higher risk if the person also demonstrates a certain behaviour (e.g. consumption of coffee). If it can then be known how much coffee the donors drink (e.g. via an internet-based survey), the samples could be compared on the basis of the coffee-drinking behaviour of their donors to see whether there is a link between the two.
If you agree, we shall contact you by e-mail for new scientific questions no more than every 6 months.
- Videos on Parkinson's disease
- Myths about Parkinson's disease
- Fact sheets
- Biannual newsletter
- Stories from Parkinson's Fighters