Scope of the JPND mapping exercise

Information is captured via a web-based survey and is limited to research funding, infrastructure and resources falling under the following categories:

  • Major programmes and research grants
  • Smaller research investments
  • Research networks
  • Population studies
  • Population cohorts
  • Case control studies
  • Disease registers
  • DNA or tissue banks
  • Animal model repositories
  • Bio/neuroinformatic infrastructures

To be included, research needs to be specifically relevant to one or more of the neurodegenerative diseases (ND) included under the JPND initiative (below) or to ND in general.

  • Alzheimer’s disease and other dementias (AD)
  • Huntington’s disease (HD)
  • Motor neurone diseases (MND)
  • Parkinson’s disease (PD) and PD-related disorders
  • Prion disease (Prion)
  • Spinal muscular atrophy (SMA)
  • Spinocerebellar ataxia (SCA)

The following conditions are not included in the JPND initiative and are excluded:

  • Multiple sclerosis and age-related macular degeneration, where the primary lesion is not neurodegenerative
  • Other comorbid conditions
  • Loss of neuronal function or cell death due directly to cancer, oedema, haemorrhage, trauma, poisoning and hypoxia

Research that is not specifically, or for the most part, focused on ND is excluded; for example, research into broader areas of neuroscience is not captured. As such it should be noted that there is much supporting research that may contribute to the overall ND research effort but which dos not meet the criteria for inclusion in the mapping exercise.

Time frame and research funding limits

Only research funding relevant to ND that was active on 1st January 2011 can be included in the exercise; any funding finishing before, or starting after, that date is excluded.

To ensure the information captured across Europe is comparable and consistent, capture of research spend is limited to investment in research programmes or grants. Accordingly, funding or investment allocated to the following is excluded:

  • Buildings, resources or infrastructure.
  • Training or career development posts (PhDs, fellowships, etc).

All programmes and grants are assigned to one of three research classifications (Basic, Clinical or Health and social care) that span the scope of the research agenda covered by JPND. The criteria used to assign these classifications can be found in the report of the 2011 mapping exercise.

Programmes or research grants are classified as major if the total investment (i) exceeds €500,000 for basic or clinical research or (ii) exceeds €200,000 for health and social care research. All research funding under this threshold is classified as smaller investments.

Definitions of research infrastructure and resources

Inclusion of infrastructures and resources is based on the definitions outlined below.

  • Research networks: Infrastructures and/or co-ordination activities to support research at the national level.
  • Population cohorts: Large, long-term studies collecting data from a population rather than a (specific) group of patients. Only population cohorts of greater than 1000 participants are collected in the mapping exercise.
  • Case control studies: Studies designed to collect data/samples from an extensively defined (phenotyped) group of patients (cases). Unless they relate to a rare neurodegenerative condition only studies with more than 200 clinical cases can be included in the survey.
  • Disease registers: Registers of patients who either participate in or have offered to participate in research studies (on ND). Unless they relate to a rare neurodegenerative condition only studies with more than 500 clinical cases can be included in the survey.
  • DNA or tissue banks: Collections of biological material for use in research studies.
  • Animal model repositories: Sites holding and maintaining animal models of ND which act as access and distribution centres for groups of external researchers. Repositories not acting as access and distribution centres are excluded.
  • Bio/neuroinformatic infrastructures: Databases, networks, or infrastructures to share/distribute data relevant to ND (medical images, prescribing data etc) or to develop/provide computational or analytical tools to acquire, store, organise, archive, analyse, or visualise such data.