The JPND Action Group on longitudinal cohort studies has published its report, bringing together for the first time the wealth of cohort opportunities for neurodegeneration research across JPND countries.

JPND is currently investigating potential actions for both disease-based and population-based longitudinal cohort studies, whereby current member state-led or European Commission-supported activities can be expanded or better exploited, or new activities identified.

A JPND Action Group on Longitudinal Cohort studies in Neurodegeneration Research met during 2013 and has reported back to JPND.  The group was tasked with:  

  • Taking stock of current longitudinal cohort studies for both ND-based and general population studies of relevance
  • Determining how JPND adds value to existing cohort investments
  • Identifying gaps and cases for new activity in areas of unmet need
  • Scoping the emerging scientific opportunities

The report spans general population-based, targeted (preclinical) and disease-focused cohorts. Valuable information that is immediately accessible include:

  • analyses of longitudinal and disease cohort studies
  • an analysis of imaging studies
  • a cohort reference list with web links

The information provided on imaging and in the reference list represents a snapshot of what was available to the Action Group during 2013. Whereas the listings aim to be as comprehensive as possible, JPND is requesting that any studies omitted from the list should contact JPND ([email protected]) with their information, which will be added when the lists are updated.       

Implementation of JPND actions in this area will be based on the advice in the report. The options for implementation are based on an analysis of the opportunities presented by current European longitudinal cohort capability as well as comparison with selected international studies. Recommendations span coordination, funding and policy areas. Priorities for action will be set by JPND Management Board for announcement in 2014.

The report can be downloaded at the link below:  



December 9, 2013