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Front Neurosci. 2017 Aug 29;11:467. doi: 10.3389/fnins.2017.00467. eCollection 2017.

Maximizing the Potential of Longitudinal Cohorts for Research in Neurodegenerative Diseases: A Community Perspective.

Author information

1
Medical Research Council Head OfficeLondon, United Kingdom.
2
Irish Platform for Patient Organisations, Science and IndustryDublin, Ireland.
3
EU Joint Programme - Neurodegenerative Disease ResearchParis, France.
4
Centre for Age-Related Medicine, Stavanger University HospitalStavanger, Norway.
5
Department of Old Age Psychiatry, Institute of Psychiatry, Psychology, and Neuroscience, King's College LondonLondon, United Kingdom.
6
Department of Neurology, Christian-Albrechts-University of KielKiel, Germany.
7
Hertie-Institute of Clinical Brain ResearchTübingen, Germany.
8
Cambridge Institute of Public Health, University of CambridgeCambridge, United Kingdom.
9
IRCCS Fondazione Santa LuciaRome, Italy.
10
Università degli Studi Niccolò CusanoRome, Italy.
11
Erasmus University Medical CentreRotterdam, Netherlands.
12
School of Health and Related Research, University of SheffieldSheffield, United Kingdom.
13
Dementia Research Centre, University College London Institute of NeurologyLondon, United Kingdom.
14
VU University Medical CentreAmsterdam, Netherlands.
15
Department of Neurology and Neurosurgery, Brain Center Rudolf Magnus, University Medical Center UtrechtUtrecht, Netherlands.
16
Centre for Clinical Brain Sciences, UK Dementia Research Institute at the University of EdinburghEdinburgh, United Kingdom.

Abstract

Despite a wealth of activity across the globe in the area of longitudinal population cohorts, surprisingly little information is available on the natural biomedical history of a number of age-related neurodegenerative diseases (ND), and the scope for intervention studies based on these cohorts is only just beginning to be explored. The Joint Programming Initiative on Neurodegenerative Disease Research (JPND) recently developed a novel funding mechanism to rapidly mobilize scientists to address these issues from a broad, international community perspective. Ten expert Working Groups, bringing together a diverse range of community members and covering a wide ND landscape [Alzheimer's, Parkinson's, frontotemporal degeneration, amyotrophic lateral sclerosis (ALS), Lewy-body and vascular dementia] were formed to discuss and propose potential approaches to better exploiting and coordinating cohort studies. The purpose of this work is to highlight the novel funding process along with a broad overview of the guidelines and recommendations generated by the ten groups, which include investigations into multiple methodologies such as cognition/functional assessment, biomarkers and biobanking, imaging, health and social outcomes, and pre-symptomatic ND. All of these were published in reports that are now publicly available online.

KEYWORDS:

flexible funding mechanism; joint programming; longitudinal cohort studies; neurodegenerative disease; research; transnational working groups

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