A pioneering Cohort Catalogue has been introduced to enhance the discovery and collaboration of neurodegeneration research across Europe. This centralized, open-access repository features over 60 research cohorts from 17 countries, covering a wide spectrum of neurodegenerative diseases. Researchers can now easily access and search metadata related to disease areas, biosample availability, imaging data, cognitive assessments, and more.
Professor Michele Hu expressed enthusiasm for the initiative, stating, "We are delighted to contribute to this exciting novel biomarker discovery platform." The University of Oxford, through the Oxford Parkinson's Disease Centre, is significantly involved in the project. Professor Hu is leading efforts to collect UK-wide biosamples from participants with Parkinson's disease, including plasma, serum, and cerebrospinal fluid samples.
The Cohort Catalogue is a key component of the European Platform for Neurodegenerative Diseases (EPND), a consortium that brings together experts in neurodegeneration research, data science, diagnostics, and treatment from 29 public and private organizations. 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 collaborative platform for data and sample sharing on a large scale.
Powered by the Alzheimer's Disease Data Initiative's AD Workbench, the EPND platform connects to a global network of authorized users and contributors. Niranjan Bose of Gates Ventures, a member of EPND's Project Management Team, highlighted the significance of the Catalogue: "EPND is committed to revolutionizing scientific breakthroughs in the effort to diagnose, treat, and prevent neurodegenerative diseases. The Cohort Catalogue is a first step towards data and sample sharing, increasing visibility and awareness of neurodegeneration research studies to maximize the benefit and impact of neurodegeneration research."
Currently, the Catalogue includes 67 research cohorts representing 159,675 participants across 12 different neurodegenerative diseases. While there is a strong focus on Alzheimer's disease, Parkinson's disease, and dementia with Lewy bodies, the Catalogue also encompasses studies on rarer conditions such as amyotrophic lateral sclerosis (ALS) and multiple system atrophy (MSA).
EPND co-coordinator and clinical epidemiologist Pieter-Jelle Visser emphasized the depth of information available: "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. This way, researchers have a single location to easily search—and discover—the complete landscape of neurodegenerative disease cohorts across Europe and beyond."
The Catalogue offers robust search and filter functionalities, allowing researchers to pinpoint cohorts that align with their specific interests. Through the "contact cohort" feature, they can initiate collaborations, request access to clinical data and biosamples, and partner on funding applications. The platform also provides self-service tools for researchers to add and manage their cohort listings seamlessly.
Looking ahead, additional features are being developed to expand the Catalogue's scope and enhance its utility for the research community. These enhancements aim to support improved discovery capabilities and future options for data requests and analysis.
Researchers interested in adding their cohorts to the Catalogue are encouraged to visit the EPND website to register and contribute to this growing resource.
Funding Acknowledgment: The EPND project has received funding from the Innovative Medicines Initiative 2 Joint Undertaking under grant agreement No. 101034344. This Joint Undertaking receives support from the European Union's Horizon 2020 research and innovation program and the European Federation of Pharmaceutical Industries and Associations (EFPIA).