Longitudinal Cohorts

Longitudinal-based cohort studies are tremendously important resources for multi-disciplinary research, in particular for research into the causes of diseases (e.g. determining risk factors).  It is also widely acknowledged that collaboration across JPND member countries would add great value to current efforts and is urgently required for research into neurodegenerative diseases.

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

A specific Action Group has been tasked with producing a report that:

  • Takes stock of current longitudinal cohort studies for both ND-based and general population-based studies of relevance
  • Determines how JPND adds value to existing cohort investments
  • Identifies gaps and any case for new activity in areas of unmet need
  • Scopes the emerging scientific opportunities
  • Makes recommendations to the JPND Management Board

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 (secretariat(at)jpnd.eu) 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.

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. The call closed on June 16th, 2014, and ten international working groups were supported under the call. The resulting reports and recommendations were published in October 2015. Click here to access the full reports.