On April 23rd, 2014, JPND 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 (ND) research.

Click here for an interview about the call with Prof. Philippe Amouyel, Chair of the JPND Management Board.

NOTE: THE RESULTS OF THIS CALL ARE AVAILABLE HERE OR AT THE LINK ON THE LEFT-HAND SIDE OF THIS PAGE

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 current population- and disease-based cohorts are to be fully exploited for ND research. 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 €500,000 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 Innovation Foundation
  • Canada, Canadian Institutes of Health Research *joined on May 28th, 2014 – specific requirements apply – see link below
  • France, French National Research Agency
  • Germany, Federal Ministry of Education and Research
  • 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

NOTE: AS OF JUNE 16th, 2014, THIS CALL IS NOW CLOSED

NOTE: THE RESULTS OF THIS CALL WERE PUBLISHED ON AUGUST 26th, 2014 AND ARE AVAILABLE HERE

A JPND informational webinar on this call took place on Friday, May 9th, 2014. Click here for more information.

Links to the relevant documents and resources can be found below:

A Call Secretariat representative is also available for questions:

Dr Stephen Meader

E-mail: jpndworkinggroups(at)headoffice.mrc.ac.uk