JPND has launched a rapid action call for leading scientists in the field to establish working groups to enhance the use of existing longitudinal cohort studies for neurodegenerative disease research.

Current population and disease-focused cohorts offer a significant opportunity for advancing our understanding of the risks of developing neurodegenerative conditions and the influences on disease progression. Such cohorts also offer the prospect of providing platforms for prevention and intervention studies in the longer term.

As identified in the recently published report of the JPND Action Group on Longitudinal Cohort studies in ND research, a number of methodological challenges remain if such resources are to be fully exploited. The report also identified a number of areas where further thinking is specifically needed to provide the necessary consensus and framework to support future studies of impact for the field. These were:

  • assessing the presymptomatic stages of ND, where new methodological approaches, tools and measures are required.
  • the development of standards to support brain imaging, where guidelines are needed to frame future multimodal imaging approaches and perspectives in molecular imaging.
  • measurement of cognitive, behavioural and functional changes of relevance to ND progression and outcome , where a consensus on the methodologies to be used is needed.
  • data handling, where the emergence of ‘omics’ technologies requires new approaches to data integration and the interrogation and accessibility of big data sets.
  • cohort alignment: in depth work is needed to identify where cohorts can be brought together in selected areas, with concurrent work on how data pooling can realistically be achieved.
  • clinical data linkage: an assessment is needed of how studies with clear clinical linkage might be exploited in prospective studies, such that study harmonisation might be achieved, with the identification of best practice for of data protection, storage and dissemination solutions.
  • the potential for exploiting intervention-studies of potential risk factors where ND is not the primary focus (eg. clinical trials in hypertension, diabetes etc), to ascertain how they could be used to adequately address risk of ND as an outcome.

JPND has decided that these issues can be progressed most effectively through assembling motivated groups of leading experts in the ND field. Accordingly community-led Working Groups are to be supported that can push forward the conceptualization of such topics in order to provide guidelines and/or best practice frameworks of value to the wider research community. Areas to be considered are highlighted above, although other topics that are similar in theme may be proposed.

Funds available and form of support

Up to €450,000 in total will be available to fund Working Groups under this call, with each Working Group able to bid up to €50,000 for support of its activities, which are expected to run for a maximum of 6 months. As the Working Groups will be expected to deliver reports of wide applicability to the field of ND research, only one activity will be funded in any topic area. Funding will cover the costs of meetings and travel required to deliver the Working Groups’ objectives.

Participating JPND countries

This is a transnational call and Working Groups can be comprised of members of any JPND-member country and beyond. However, the lead-coordinator of the Working Group should be based in one of the following countries that are contributing to this call:

  • Denmark, Danish Strategic Research Council
  • France, French National Research Agency
  • Germany, Federal Ministry of Education and Research (pending final approval)
  • Italy, Ministry of Health
  • Luxemburg, National Research Fund
  • The Netherlands, The Netherlands Organisation for Health Research and Development
  • Norway, The Research Council of Norway
  • Sweden, The Swedish Research Council for Health, Working Life and Welfare
  • United Kingdom, Medical Research Council


The proposal submission deadline for the call is 17:00 (GMT+1, Summer Time) on June 16th, 2014

More information on the call is available at:  

Media enquiries should be directed to:

Derick Mitchell, [email protected], +353 1 2345103



April 23, 2014