GENERAL QUESTIONS

What does NCER-PD stand for?

NCER-PD stands for ‘National Centre of Excellence in Research on Parkinson’s Disease’. It’s a so-called ‚research centre without walls’, that unites the key institutes in biomedical research in Luxembourg. NCER-PD has set itself the aim to better understand Parkinson’s disease and thereby improve diagnosis and treatment of this yet incurable disease. The recruitment of patients with Parkinsonism (i.e. not only patient with classical Parkinson’s disease but also for instance rare atypical forms) and a similar number of healthy control subjects in Luxembourg and the Greater Region are a central aspect of this project. >> More about our research and how you can participate

What is the aim of the NCER-PD research programme?

The aim of this longitudinal study is to find and validate biomarkers (patterns of biological features, such as blood proteins), with which diagnosis and classification of patients in sub-groups can be improved. >> More about our research

Why is my participation in the NCER-PD research programme so important?

You are a very important member of the study and the contribution of each individual is extremely important for the improvement of diagnosis and treatment of Parkinson’s disease. Without the participation of patients and healthy controls and donation of samples, research would not advance and we would not have the possibility to develop new preventive, diagnostic and therapeutic ways to battle Parkinson’s disease.

Who is carrying out the research programme?

The study is a collaborative project between the Luxembourg Centre for Systems Biomedicine (LCSB) from the University of Luxembourg, the Integrated Biobank of Luxembourg (IBBL), the Luxembourg Institute of Health (LIH, formerly CRP-Santé) and the Centre Hospitalier de Luxembourg (CHL). In addition, the Luxembourgish partners are very closely linked to many national and international clinical and research institutions. >> More about our team

Who is funding the research programme?

The NCER-PD programme is funded by an independent national funding agency, the Fonds National de la Recherche (FNR) for a duration of 5 years with 8 Million Euros.

end faq

PARTICIPATION

Can I also participate in the NCER-PD research programme if I am healthy?

In every comparative research study, so-called control persons of matching age and gender are needed that serve as a reference for comparison with patients. >> More about participation as control subjects

Do I have to pay something to participate in the study?

Of course you will not be charged for the examinations done in the study. All samples will be taken by the study nurse or the neurologist and will be processed and stored under strict privacy conditions at the Integrated Biobank of Luxembourg (IBBL). The costs for these procedures are covered by the research programme.

What will I get for participating in the study?

Your contribution to our research will lead to a better understanding of Parkinson’s disease through which patients can benefit today and in the future. As participant of our study, you can subscribe to a regular newsletter in which you will receive specific information about Parkinson’s disease and in which we will inform you about recent results of the study and future events such as patient seminars and conferences. In this way, you will be the first to know about new scientific results world-wide through which diagnosis and treatment can be improved and where clinical studies might be offered. This way you will always stay up-to-date about the activities of the study and its research results.

What is a biomarker?

Biomarkers are characteristic biological features that can be objectively measured and can point to a normal biological or pathological process in the body. A biomarker may be cells, genes, gene products or certain molecules such as enzymes or hormones. Complex organ function or characteristic changes in biological structures are used as medical biomarkers. Such biomarkers can give an indication about the disease itself or its progression.

What are genetics analyses?

At the beginning, you will be asked for permission to genetically analyse your samples in the context of the NCER-PD research programme. Genes are present in every cell of the body.

They serve as ‘construction manuals’ in the body and children inherit them from their parents. The genetic information passes on from cell to cell when new cells are produced in the body. Scientists try to understand the link between diseases and genes. When this link is better understood, improved tests and treatment can be developed that is tailor-made to each individual patient (=personalised medicine). In order to enable this type of research, genes from diseased and healthy people need to be analysed and compared with each other.

Why do you need blood, saliva and urine samples?

These samples can be used for many purposes in Parkinson’s disease research. During your initial visit, you will be informed in detail and be asked for permission. The main aim of the study is to identify and validate new biomarkers that allow a better diagnosis. The current diagnosis of Parkinson’s disease is exclusively based on clinical examinations that are sometimes complemented with brain imaging in order to exclude other causes. We are looking for new biomarkers, which are characteristic biological measurements that are found in biological samples showing a big difference between patients and healthy controls and which can be used to better diagnose a disease. The samples are also used to explore the effect between genetic predisposition (an inherited tendency to react strongly to certain factors) and the occurrence of the disease.

What do you do with the skin sample?

The skin sample will be processed and stored at the Integrated Biobank of Luxembourg (IBBL) before the derived skin cell cultures are anonymously transferred to the researchers. The skin cells can be transformed into stem cells, from which one can recreate dopamine-producing midbrain neurons, the specific nerve cells that are affected in Parkinson’s disease. These nerve cells can be used to research the disease in the laboratory and to test new medication suitable as therapies for Parkinson’s disease.

Do I have to donate cerebrospinal fluid or skin tissue?

No, you are free to choose which samples you want to donate. A standard participation only involves urine, saliva and blood samples. Though we’d be pleased, if you’d decide to additionally support the research through donation of cerebrospinal fluid, stool or skin samples.

Who has access to my personal data and my samples?

Only the clinical team (neurologist, neuropsychologist, nurse), that is bound to medical confidentiality, has access to your personal information (name, date of birth etc.), but no access to your research results that follow from your samples. The Biobank and the researchers receive the samples and your study data in a fully anonymised form. We will explain every step of this process during your first visit. >> More about how my samples and my data are treated

How long do I need to participate in the study?

In general, we propose to have all tests and sample collection in one session. In case you’d like to further support the study with further samples and tests, additional visits can be planned depending on your availability. It may be that we will ask participants after a few years to repeat (part of) the tests. However, you are free to decide in which parts and how long you want to participate. >> More about how to participate

Will I be diagnosed or treated during my participation?

Generally, it is a pure research project, which means that we do not carry out diagnosis or treatment during the sessions. For questions on this topic, please contact your neurologist.

Can I get my results?

Your results will be anonymised for privacy reasons, such that nobody knows which samples are from which participant. This means that generally we will not provide you with diagnostic results of your samples. However, we will keep you regularly informed of the results from the entire study. In this way, you will be informed if the results have direct medical benefit. For questions about diagnosis and treatment, please consult your neurologist.

May I eat and drink before participating?

We would like to ask you not to eat, drink (other than water), smoke, and take medication or drugs one hour before participating. You are allowed to drink water at any time.

I have recently donated blood or underwent blood sampling at my doctor. can you use these samples or results for research?

For the research to be meaningful, all samples must be treated in the same manner. Therefore we have to take blood again during your visit according to our standards.

Is there a maximum age?

All people above the age of 18 can take part in the study.

end faq

CONTACT

What happens if I can't attend or forget to attend an appointment?

Please contact our secretary in order to let us know and reschedule your appointment >> To Contact

What shall I do it something changes in my personal situation?

Please contact our secretary in order to discuss this. If your health status changes, we would like to continue following you and collect samples. This also applies if your symptoms improve. If you move out of Luxembourg and would still want to participate in the study, we’ll help you find a way.

Can I still take part in the study if I don’t live in Luxembourg (anymore)?

Yes, as long as you can still attend your appointments in Luxembourg or at any of our partner institutions in the ‘Greater Region’ (France, Belgium, Germany).

Where can I participate in the Greater Region and how can I sign up at the partner institutions?

We cooperate in the Greater Region with the following clinics:

For questions about participations at our partner institutes, please contact the study secretariat.

Will I stay informed about the study?

You can subscribe to a regular newsletter that informs you about the progress of our study. In addition, you will always find news on our website >> To the news section

end faq