Worldwide, some 7-10 million people live with Parkinson’s disease (PD). In Luxembourg, it is estimated that up to 1,000 people are affected by this chronic and progressive neurodegenerative disease.
The risk of developing a neurodegenerative disease, such as Alzheimer’s or Parkinson’s disease, increases as we grow older, with up to 10% of PD patients already diagnosed before they turn 50. At the time of diagnosis, PD patients typically exhibit motor symptoms including muscle stiffness, shaking and slowness in initiating movement. PD takes years to develop and the damage to nerve cells is already extensive by the time these motor symptoms appear. However, up to 10-20 years before this, most patients will exhibit problems with their vision, constipation, sleep disorders, or a reduction in their sense of smell. These symptoms are today considered pre-motor risk factors for developing PD.
In order to treat patients as early and as efficiently as possible, it is imperative that accurate early diagnostic tests and better treatments are found. Understanding this urgency, the biobank participates in both, national and international, PD studies. At the same time, we work closely with the local patient association, Parkinson Luxembourg, to keep patients informed about PD research and show our solidarity.
Since 2013, we have worked as the central European biobank for a project funded by the EU Joint Programme for Neurodegenerative Disease Research (JPND), the largest global research initiative aimed at tackling the challenge of neurodegenerative diseases. The cerebrospinal fluid and blood samples collected at multiple European hospitals are stored at IBBL and made available to scientists from 19 different countries. Besides taking care of the physical storage of biological samples for the project, we have set up a web-based IT platform that captures all data related to the samples and we have also participated in the research itself by assessing the way in which cerebrospinal fluid is processed in the laboratory.
In 2016, IBBL joined another JPND project as external collaborator. Researchers from Luxembourg, Germany, Austria, the Netherlands and Israel have been combining their strengths to culture human brain-like structures from Parkinson’s patient cells to elucidate the effects of the disease on the brain. Within the consortium, we are responsible for the reception of the samples, as well as for the expansion, storage and redistribution of the cells. In addition, our researchers help test a novel cryopreservation method for the brain structures.
The biggest initiative in PD research in Luxembourg was launched in 2015: the National Centre of Excellence in Research on Parkinson’s Disease (NCER-PD). Created by the Fonds National de la Recherche (FNR), NCER-PD is an 8-year programme that aims to find new ways for an earlier diagnosis and better treatment for Parkinson’s disease.
Just over 580 patients and healthy donors from Luxembourg and the Greater Region participated in the study in 2016. This number reflects the strong interest and will of the Luxembourgish population to advance biomedical research. Their biological samples, such as blood, urine and saliva, were handled with the greatest care by the biobank, which also set up quality control tests to maximise donors’ contribution and ultimately ensure robust research outcomes.
Whether you have Parkinson’s disease or not, you can contribute to Parkinson’s research by participating in the National Centre of Excellence in Research on Parkinson’s Disease (NCER-PD), a collaboration between IBBL, the Luxembourg Centre for Systems Biomedicine (LCSB), the Luxembourg Institute of Health (LIH) and the Centre Hospitalier de Luxembourg (CHL).
For more information on the NCER-PD programme and your participation, please visit www.parkinson.lu
What about ethics ?
All of our biological samples are contributions from volunteers, both patients and healthy citizens, who have given specific consent for the collection of their sample. Every donor has the right to withdraw their consent at any time, in which case all of the unused samples will be destroyed and related data deleted.
We work with national and international authorities to ensure that the collection and use of samples and data conform to high ethical standards and safeguard the privacy of the donor. All of our donors’ identities are kept strictly confidential and our data secured. We have a rigorous process in place to remove all identifying information from samples and health records at the source, so no identifying information is known by the biobank staff or given to researchers.
Before receiving any samples, research organisations must submit an application to our sample access committee. To receive the approval of this committee, applicants must show that they have the expertise to perform their proposed research, that the proposed research has ethical clearance, and that they have sufficient funds to see the research through to completion.