Reliable estimates of the numbers of people with neurodegenerative diseases such as Parkinson’s or Alzheimer’s disease remain difficult to find. One 2019 estimate by Alzheimer Europe put the number of people living with dementia in the European Union at 7.8 million people. Another study published in The Lancet in 2015 estimated the global number of Parkinson’s patients to be 6.2 million. Both studies note that the real numbers are likely higher.
One major problem is that there are few known indicators that a patient is in the early stages of such diseases. Detecting these indicative ‘biomarkers’ could help clinicians detect the disease early in patients, measure how they respond to treatment, and find which groups of people respond well to specific medicines.
Although there have been decades of research to find these biomarkers, the samples and data from this research are spread across laboratories in multiple countries. Each of these may also have different rules and protocols for collecting, storing and sharing samples and data, which further complicates cooperation between researchers, and across borders.
To make things easier the Innovative Medicines Initiative (IMI)-funded European Platform for Neurodegenerative Diseases (EPND) project aims to bring these disparate sources together in a central hub.
“The IMI wanted to address a major problem for neurodegenerative disease research: the fact that data and samples from clinical studies are often quite siloed,” says Professor Pieter Jelle Visser, a clinical epidemiologist at the University of Maastricht, and co-coordinator of EPND.
He explains that the platform wants to bring together European neurodegenerative disease studies to accelerate the discovery and validation of biomarkers.
“We're providing pathways for researchers to connect with cohorts, but also for those cohorts to develop new funding applications, develop new collaborations, and create a community,” said Prof. Visser.
In March this year, EPND launched the first component of its platform: the cohort catalogue, which covers neurodegeneration research from 12 disease areas. This version already contains 68 cohort studies, equal to around 160,000 participants from 17 European countries.
The catalogue also lets researchers filter these cohort studies by certain criteria to suit their own research. Researchers could for instance search for studies on Lewy-body dementia that are collecting serum samples, MRI scans, or a combination of other factors.
The EPND project runs until 2026; the goal is for the platform to become a self-sustaining and scalable initiative that enables researchers to discover and access biological samples and data wherever they may be.
“Ultimately, we want the catalogue to be co-owned by the research community,” said Prof. Visser. “We want them to have a stake in updating the catalogue, and eventually in developing EPND, so we can support them to discover, access and share samples and data.”
Prof. Visser explains that the Cohort Catalogue will connect to the Alzheimer’s Disease Workbench of the Alzheimer’s Disease Data initiative, which will allow researchers to share their data, resources, and tools worldwide.
“At the moment, it's European research cohorts that are being put to the fore, but the idea is that we then open that out to a more global audience,” he said.
EPND is supported by the Innovative Medicines Initiative, a partnership between the European Union and the European pharmaceutical industry.