Scope of the JPND mapping exercise
For the 2016 mapping exercise, information was captured across JPND-member countries via an electronic survey for research funding, infrastructure and resources falling under the following categories:
- Capital infrastructure
- Research networks
- Population cohorts
- Case control studies
- Disease registers
- Experimental models
- Bio/neuroinformatic infrastructures
To be included, research was required 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 & other dementias (AD)
- Huntington’s disease (HD)
- Motor neurone diseases (MND)
- Parkinson’s disease (PD) & PD-related disorders
- Prion disease (Prion)
- Spinal muscular atrophy (SMA)
- Spinocerebellar ataxia (SCA)
The following conditions were not included in the JPND initiative and were 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 was not specifically, or for the most part, focused on ND was excluded; for example, research into broader areas of neuroscience was not captured. As such it should be noted that there was much supporting research that may contribute to the overall ND research effort but which does 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 2016 was included in the exercise; any funding finishing before, or starting after, that date was excluded.
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 2016 mapping exercise.
Programmes or research grants were classified as Investments>€500k 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 Investments<€500k.
For the 2011 mapping exercise, capture of research spend was limited to investment in research programmes or grants. Accordingly, funding or investment allocated to buildings, resources or infrastructure and training/career development posts following was excluded in the baseline data sweep.
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.
- Experimental 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.