EPND launches its Cohort Catalogue, facilitating discovery of over 60 neurodegeneration research cohorts from 17 countries across Europe
On 14 March, the European Platform for Neurodegenerative Diseases (EPND) launched its Cohort Catalogue. Featuring an extensive list of international cohorts across the neurodegenerative disease spectrum, the Cohort Catalogue is a central, open, accessible repository for researchers to discover ongoing studies and search metadata by disease area, biosample availability, imaging and cognitive data, and more.
The EPND consortium brings together experts in neurodegeneration research, data science, diagnosis and treatment from 29 public and private organisations. BMD team contributed developing EPND Node and also several data models. Funded by the European Union’s Innovative Medicines Initiative, EPND aims to accelerate the identification, development, and validation of biomarkers for neurodegenerative diseases, by establishing a data- and sample-sharing platform for collaborative, large-scale research. The Alzheimer’s Disease Data Initiative’s AD Workbench will power the EPND platform, connecting it to a global network of permissioned users and contributors.
According to Niranjan Bose of Gates Ventures, a member of EPND’s Project Management Team, “EPND is committed to revolutionising scientific breakthroughs in the effort to diagnose, treat, and prevent neurodegenerative diseases. The Cohort Catalogue is a first step towards data and sample sharing, by increasing visibility and awareness of neurodegeneration research studies, to maximise the benefit and impact of neurodegeneration research.”
Currently, 67 research cohorts are included in the Catalogue, with sites in 17 countries across Europe. In total, these neurodegenerative disease cohorts represent 159,675 research participants over 12 different disease areas, with a particular focus on Alzheimer’s disease, Parkinson’s disease and dementia with Lewy bodies, but also including participants with rarer diseases like amyotrophic lateral sclerosis (ALS) and multiple system atrophy (MSA).
“To ensure the Cohort Catalogue would be as useful as possible, we incorporated a vast array of metadata for each cohort, including whether plasma and cerebrospinal fluid samples are included, or MRI or amyloid PET scan images,” said EPND co-Coordinator and clinical epidemiologist, Pieter-Jelle Visser. “This way, researchers have a single location to easily search – and discover – the complete landscape of neurodegenerative disease cohorts across Europe, and beyond.”
Using the Catalogue, researchers can search and filter cohorts by metadata characteristics, to discover cohorts that could be useful in their own research. Through the Catalogue “contact cohort” feature, researchers can engage with cohorts of interest, to kick-start new collaborations, initiate the sharing of clinical data and biosamples, and partner on funding applications. The Catalogue also offers self-service tools for researchers to add and manage their cohort listings with ease. Additional features and benefits are currently under development to extend the size and scope of the catalogue, and support the research community with enhanced discovery and future request and analysis options.
“We’re proud to be part of the EPND Cohort Catalogue,” said Rejko Kruger from the University of Luxembourg, Principal Investigator of the NCER-PD cohort. “I’m hopeful we’ll find collaborators in our quest to develop new diagnostics and treatments for neurodegenerative diseases. And I encourage other cohorts to join us in this effort.”
For more information about EPND, please visit https://epnd.org/. Interested in adding your cohort to the Catalogue? Click here to register and take the first steps to joining the EPND community.
Acknowledgement
The EPND project has received funding from the IMI 2 Joint Undertaking (JU) under grant agreement No. 101034344. The IMI JU receives support from the European Union’s Horizon 2020 research and innovation programme and EFPIA.