JPND Mapping Exercise Report

Transcription

1 JPND Mapping Exercise Report 1. Background and Purpose The EU Joint Programme - Neurodegenerative Disease Research (JPND) has been established to address the growing societal challenge presented by age-related neurodegenerative diseases (ND). The initiative spans the biomedical, healthcare and social science agendas, and seeks to improve the scientific understanding of neurodegenerative disorders, provide new approaches for their prevention, diagnosis and treatment, and ensure effective provision of health and social care and support so that individuals can receive optimum care at all stages of their illness. The first goal of the initiative has been to establish a joint Strategic Research Agenda (SRA) to guide research activity and investment over the coming decade. To underpin development of the JPND SRA and ensure that recommendations paid due consideration to the existing research landscape, an exercise to map the national and European research and infrastructure relevant to ND was conducted. The primary aim of this exercise was to give an objective view of the scale and scope of research activity in neurodegenerative diseases amongst JPND member countries. This information was used to identify gaps and opportunities JPND could build upon and clarify medium to long-term research needs, objectives and priorities. The data collected also provides a baseline for monitoring spend on ND research activity and resources relevant to ND across Europe. The secondary aim of the mapping exercise was to provide an updateable, publically accessible database of the information captured. The information contained in the database is likely to be a useful resource for the scientific community and be valuable for anyone interested in finding out about ongoing research relevant to ND. It is hoped that the availability of such an open-access and searchable web-based database, containing detailed information on funded research, resources and infrastructures, will encourage (greater) networking, collaboration and resource sharing. The database is available through the JPND website at: Page 1 of 46

2 2. Data collection The parameters and specifications for the mapping exercise were designed in conjunction with the JPND Scientific Advisory Board (SAB) to ensure that the data captured would be useful for JPND and researchers working in the field. A web-based survey was designed to facilitate collection and classification of data which broadly fell into two types: i. Research funding information and research infrastructures relevant to ND: Major programmes and research grants Smaller investments Research networks ii. Population studies and resources relevant to ND: Population studies o o o Biobanks Population cohorts Case-control studies Disease registers Animal model repositories Bio/neuroinformatic resources Surveys relating to research funding and research infrastructures were completed by government or charitable organisations responsible for funding research within JPND member countries. For each country, a representative was assigned responsibility for co-ordinating activity and contacting agencies responsible for funding relevant projects. A list of organisations providing funding information can be found in the section: Research Funding Country Specific Information. No information was requested from commercial organisations working in ND research. For population studies and resources relevant to ND, detailed information was provided by the principal investigator (PI) or resource co-ordinator. To ensure data met the agreed inclusion criteria, and that there was no duplication of projects, studies or resources etc, all data was checked and validated at two levels; firstly by the nominated mapping contact at the national level, and then by the JPND team responsible for database management to ensure overall consistency and accuracy of data. Data collection ran for approximately 10 months from January Data was subject to interim analysis and validation throughout this period and was presented to the JPND Management Board at regular intervals to highlight progress and help identify any areas of concern. Page 2 of 46

3 Figure 1: Schematic of the JPND mapping exercise data collection process. Additional Information The JPND mapping exercise originally set out to capture two additional sets of information relevant to neurodegenerative disease national and regional policies and details on national Centres of Excellence. Due to inconsistencies apparent through the initial round of data collection, it was decided that data collection should be terminated in these domains; this information is therefore not included in the overall analysis or the public database. Policy frameworks: Only a small number of countries supplied information relating to policies, and while the SAB considered that the information captured was broadly useful, it was agreed that comparison of health and social care systems, frameworks and guidelines relevant to this area would be best accomplished via a distinct research project. Centres of Excellence (CoE): For the purposes of the mapping exercise a CoE was defined as a directed, long-term strategic investment of 5 years or more encompassing programmatic support for a number of senior investigators with an established management structure. However the CoEs captured proved to be too heterogeneous in nature, spanning large networks through to small research groupings with a variety of specific relevance to neurodegeneration. Due to the perceived lack of usefulness of this data to the research community, and given that constituent research programmes were recorded separately, collection of information relating to CoEs was not continued. Future Plans At the time of writing it is proposed that second mapping exercise be run in 2014 to record research programmes or grants live at 1st January The aim of this second exercise would be to allow comparison of the research funding landscape preand post- development of the JPND Strategic Research Agenda. Though 1/1/14 will be too early to fully determine if JPND has had significant impact on neurodegenerative disease research in Europe it is hoped that this second mapping exercise will detect greater investment in this area and potentially a rebalancing of research investment across the areas covered by JPND. Page 3 of 46

4 3. Mapping Exercise Results 3.1 Research Funding In order to provide a baseline of funding information for the JPND initiative, the mapping exercise conducted in the research priority setting phase of JPND captured details of European research funding relevant to ND that was active on 1 st January 2011 i.e. a snapshot of European research funding extant at the beginning of To ensure the information captured across Europe was comparable, consistent and manageable, it was decided to limit capture of research spend to investment in research programmes or grants. Accordingly, funding or investment allocated to the following was not recorded: Generic infrastructures such as faculties and buildings Training or career development posts (PhDs, fellowships, etc) i. Disease definitions To be included in the exercise, research needed to be specifically relevant to one or more of the neurodegenerative diseases (ND) included under the JPND initiative (below): Alzheimer s disease and other dementias (AD) Motor neurone diseases (MND) Prion disease (Prion) Parkinson s disease (PD) and PD-related disorders Huntington s disease (HD) Spinocerebellar ataxia (SCA) Spinal muscular atrophy (SMA) The following conditions are not included in the JPND initiative and were excluded: Multiple sclerosis and age-related macular degeneration, and other conditions where the primary lesion is not neurodegenerative Loss of neuronal function or cell death due directly to cancer, oedema, haemorrhage, trauma, poisoning and hypoxia Other comorbid conditions 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 is much supporting research that may contribute to the overall ND research effort but which did not meet the criteria for inclusion in the mapping exercise. ii. Research classification All programmes and grants were assigned to one of three research classifications that spanned the scope of the research agenda covered by JPND. The full set of criteria can be found in the Annex, but are briefly summarised as follows: Page 4 of 46

5 Basic: Aetiological and underpinning research and research relating to detection, screening, diagnosis or development of treatments and therapeutic interventions carried out in model systems or preclinical settings (i.e. not in human patients). Clinical: Research relating to detection, screening, diagnosis, prevention or treatment of disease or promotion of patient well-being, conducted in/on (live) humans, and patient-oriented at some level. Health and social care: Research relating to care or management of disease, provision and delivery of health and social care services (including health economics, health policy, research governance etc), and the social or societal impact of disease. Programmes or research grants were classified as major investments if the total investment i) exceeded 500,000 for basic or clinical research or ii) exceeded 200,000 for health and social care research. For programmes or grants above these thresholds, details of the title, principal investigator(s), project abstract and disease relevance (up to three diseases) were recorded alongside the total amount and timeframe of investment. For programmes or grants below the thresholds (classified as smaller investments), details of individual projects were not collected. Instead, gross investment total and number of projects were captured for each research classification (i.e. basic, clinical or health and social care). Individual grants could only be allocated to one of the research categories; it was not possible to allocate percentage relevance to more than category. Gross (full value) and per year figures for European investment in research funding identified through the mapping exercise as specifically relevant to ND are presented in Table 1, below. Figures are broken down by size of investment (major v smaller) and by research category. Per year figures were calculated by dividing the total amount of investment by number of years it was allocated over. As timeframe of investment was not recorded for smaller investments, for this calculation it was assumed that the average length of investment was three years. Number of projects Full value ( millions) % Per year ( millions) % Total research funding , Major investments 360 1, Smaller investments Basic , Clinical Health and social care Table 1: Total investment in programmes and projects live at 1st January 2011: Gross and annualised totals for investment in research funding identified across the participating JPND countries/organisations and the EC (FP7). Totals have been rounded to the nearest million euros. Page 5 of 46

6 Belgium Czech Rep. Denmark Finland France Germany Ireland Italy Luxembourg Netherlands Norway Poland Portugal Slovak Rep. Slovenia Spain Sweden Switzerland Turkey UK EC m/yr Note: Full value and per year figures for total research funding are slightly higher (~ 4 million full value and ~ 1 million per year) than those presented in the JPND Research Strategy due to amendments in the data provided by several JPND members. Figures for the other categories are slightly higher/lower for the same reason. Of the investment identified, the vast majority (over 80% of the full value) consists of funding for major programmes or grants (i.e. research awards of a value of more than 500,000/ 200,000). The total level of investment in research specifically relevant to ND identified through the mapping exercise varied considerably across the JPND member countries. Figures for each JPND member country and the European Commission are given in the later section: Research Funding Country Specific Information. A comparison of annualised investment relevant to ND per country is presented in Figure 2 below Figure 2: Investment by country: Annualised investment ( millions per year) identified through the mapping exercise according to JPND member country and the EC (FP7). As reflected in the figures presented in the Table 1, the majority of research investment identified across JPND member countries and the EC can be classified as basic (and preclinical) research, with a relatively minor proportion attributed to health and social care research. That the majority of research investment is in basic or preclinical as opposed to clinical research is at least in part due to the level of our scientific understanding. At present the mechanisms underlying neurodegenerative disorders have not been elucidated, and to date only a relatively low number of therapies/therapeutics have been developed to the point where they can be trialled in humans. Interestingly, within individual JPND member countries the percentage investment allocated to the three research domains does vary (see Figure 3, below). Page 6 of 46

7 Belgium Czech Rep. Denmark Finland France Germany Ireland Italy Luxembourg Netherlands Norway Poland Portugal Slovak Rep. Slovenia Spain Sweden Switzerland Turkey UK EC 0% 20% 40% 60% 80% 100% Basic Clinical Health and Social Care 3: Investment by research domain by country: Percentage annualised investment for JPND countries and the EC (FP7) at 1st January 2011 classified as basic, clinical or health and social care research. A breakdown of the full value and annualised amounts for each country and be found in the section: Research Funding Country Specific Information. Information on disease relevance was captured for individual major programmes or grants (> 500/200k), but not for the smaller projects where only cumulative information was provided through the mapping exercise. Across JPND, the highest percentage of identified investment was committed to major research programmes spanning a number of ND (more than three), classified as ND in general see Table 2 below 1. In terms of individual diseases, the majority of investment was directed towards projects relevant to Alzheimer s (31.4% per year) or Parkinson s disease (14.3% per year), the two most prevalent ND. 1 Where a project was selected as relevant to two or three diseases the full value of the project was divided by the number of diseases in question. Where projects were relevant to more than three diseases, all funding was allocated to the ND general category. Page 7 of 46

8 Disease Number of projects Full value ( millions) % Per year ( millions) % AD MND Prion PD HD SMA SCA ND in general Table 2: Investment in major programmes and projects per disease: Full value and per year investment in major research programmes or projects identified across the participating JPND countries and the EC (FP7). Totals have been rounded to the nearest million euros. Note that numbers and percentages are slightly different to those presented in the JPND Research Strategy due to amendments in the data provided by several JPND members. ND general 41.5% AD 31.5% MND SMA 0.8% SCA 0.2% HD 3.5% PD 14.2% Prion 5.2% 3.1% Figure 4: Annualised investment in major programmes or projects by disease area: Per year investment in major research programmes or project identified across the participating JPND countries and the EC (FP7). Note that percentages are slightly different to those presented in the JPND Research Strategy due to amendments in the data provided by several JPND members. Page 8 of 46

9 3.2 Research Infrastructure and Resources To be included in the exercise research infrastructure and resources needed to be relevant to, or potentially relevant/useful for investigation of, one or more of the neurodegenerative diseases (ND) included under the JPND initiative or to ND in general (see 3.1 Research Funding for further information). Information captured during the mapping exercise including details relating to the characteristics and accessibility of the relevant resource or data. Figures and analysis presented is reflective of resources captured at 31/12/2011. Infrastructure/Resource Number Captured Research networks 34 Population cohorts 81 Case-control studies 22 Disease registers 21 Biobanks 87 Animal model repositories 12 Bio/neuroinformatic resources 24 Table 3: Summary of research infrastructure and resources captured. Research networks Research networks were broadly defined as infrastructures and/or co-ordination activities to support research at the national or European level. AD MND Prion PD HD SCA SMA ND gen Table 4: Research networks relevant to specific ND: A total of 34 research networks relevant to the full range of ND were captured; some are relevant to more than one ND. All research networks could broadly be assigned to one of five groups: ND specific research network: 19 General neuroscience/aging network: 3 Brain/biobanking network: 6 Imaging/other infrastructure network: 4 Animal model network: 2 Page 9 of 46

10 Population cohorts Population cohorts were defined as large, long-term studies collecting data from a population rather than a (specific) group of patients. Only population cohorts of greater than 1000 participants were included. AD MND Prion PD HD SCA SMA ND gen Table 5: Population cohorts relevant to specific ND: 81 population cohorts were captured; some are relevant to more than one ND. The range of participants enrolled in the various population cohorts is indicated in Figure 5, below. Around 60% of cohorts had 1,000 5,000 participants enrolled and over 25% have more than 15,000 participants >15, ,001 15, ,000 5, ,001 10,000 8 Figure 5: Size of population cohorts: Number of participants enrolled each cohort (n=81) was indicated by selecting one of four size ranges. A minimum threshold of 1000 participants was required for inclusion in the mapping exercise. Information captured included inclusion/exclusion criteria, study design, case matching and data/sample collection, storage and distribution or access. Details of the study designs employed are indicated in Figure 6. The majority of studies were found to be prospective. Page 10 of 46

11 Prospective Retrospective Longitudinal Crosssectional n = Figure 6: Population cohort study design: One or more of four possible options relating to study design could be selected plus there was the option to provide additional comments. Case-control studies Case-control studies are designed to collect data and often samples from an extensively phenotyped group of patients in an attempt to identify factors associated with disease. Data from patients is compared with data captured from a specified set of control participants. AD MND Prion PD HD SCA SMA ND gen Table 6: Case-control studies relevant to specific ND: The total number captured was 22 with some indicated to be relevant to more than one ND. Studies with the following number of participants were captured in the exercise: 1 1,000 participants: 19 1,001 5,000 participants: 2 5,001 10,000 participants: 1 Page 11 of 46

12 Age Sex Co-morbidities Cognitive function Physical ability n = 22 As for population cohorts information captured included inclusion/exclusion criteria, study design, case matching and data/sample collection, storage and distribution or access. 16 of the 22 studies captured were indicated to be prospective in design. For the majority of studies captured, cases/patients were matched by both age and sex with over a third also matched by cognitive function (see Figure 7 below) Figure 7: Case matching in case-control studies: One or more of five possible options relating to case matching could be selected plus there was the option to provide additional comments. Disease registers Registers of patients who have offered to participate in research studies (on ND) and studies involving relevant groups of patients not captured as population cohorts or case-control studies were captured under the collective heading of disease registers. AD MND Prion PD HD SCA SMA ND gen Table 7: Disease registers relevant to specific ND: 21 disease registers were captured. Some were indicated to be relevant to more than one disease or have details of patients with distinct diseases. Page 12 of 46

13 Registers involving the following number of clinical cases were captured in the mapping exercise: clinical cases: ,000 clinical cases: 1 1,001 5,000 clinical cases: 10 5,001 10,000 clinical cases: 2 >10,000 clinical cases: 1 Information captured included inclusion/exclusion criteria, measures used to characterise participants and data/sample collection, storage and distribution or access. 17 of the disease registers captured indicated that tissues/samples/dna could be made available to other groups with eight of the register able to supply DNA samples from living patients. Biobanks Details of 87 repositories holding collections of (human) biological material for use in research studies were captured. AD MND Prion PD HD SCA SMA ND gen Table 8: Biobanks holding material for specific ND: Many biobanks (n = 87) hold biological material relevant to multiple diseases. PIs or managers of biobanks were asked to provide information on the material held, how it was obtained and relating to storage and external access. Of the 87 biobanks, 57 hold tissue or samples from a variety of relevant locations, 67 hold DNA samples and 28 hold relevant human cell lines (see Tables 9 and 10, below). Tissue (donors) Tissue (source) Nerve biopsy Muscle biopsy CSF 24 > Brain 40 Total 57 Spinal-cord 24 Table 9: Number of tissue/sample donors and source of material. Page 13 of 46

14 Not linked Medical records Study-associated dataset Clinical trial data n = 40 DNA (donors) Cell lines > > Total 67 Total 28 Table 10: Number of DNA donors and distinct cell lines held by biobanks: The total number of biobanks holding DNA or cell lines is indicated at the foot of each column. Brain-banks 40 repositories indicated they hold post-mortem brain material, with 28 also holding material from healthy individuals or controls. All bar one brain-bank indicated that at least some records could be linked to clinical information. A breakdown of what clinical information is linked to tissue samples is indicated in Figure 8 below. Note that records could potentially be linked to more than one type of clinical information or only some records could be linked Figure 8: Linkage of post-mortem brain samples to clinical information. Page 14 of 46

15 35 of 40 the repositories collecting post-mortem brain material provided information on the number of donors from which tissue was obtained. As indicated in Figure 9 below at least 13 brain-banks hold material from over 1000 different donors. > Unknown Figure 9: Number of donors providing tissue per brain-bank: The number of donors providing samples was indicated by selecting one of four size ranges; the unknown category represents those repositories not selecting an option. Animal model repositories Inclusion in the mapping exercise was limited to sites holding and maintaining animal models of ND and acting as access and distribution centres for external researchers. AD MND Prion PD HD SCA SMA ND gen Table 11: Number of repositories holding animal models relevant to specific ND: Some of the 12 repositories captured hold models for multiple diseases. Detailed information, such as genotype and phenotype, on models of ND (see Table 11, above) and other relevant models (cognitive, motor etc) held by the repository was captured as was information relating to access, distribution and development of models. Repositories primarily held rodent models (29), but models in non-human primate, Drosophila (fly) and C. elegans (worm) were also recorded. All 12 repositories held (live) animals, with four of the repositories also holding frozen embryos and genetic material, and three holding frozen sperm (all from animals). Page 15 of 46

16 Name/location Note Country A.I. Virtanen Institute/ Biocenter Kuopio, University of Eastern Finland Models of AD, PD, HD and ALS (MND) plus additional models with cognitive and motor impairment; PD models is in C.elegans with the AD and ALS models in mice. Finland Alzheimer Centre in Nijmegen BIOTERIO - Centre for Neuroscience and Cell Biology, FMUC BRAINS Unit, Lund University Champalimaud Animal Facility FinMIT centre of excellence, University of Helsinki Mouse model recapitulating some of the pathological and behavioural aspects of AD; expression of amyloid precursor protein at physiological levels. Mouse models of AD and HD. Viral vector based models of PD and HD and cognitive and motor function. Mouse models of PD, HD, SCA and relevant to neurodegeneration. Mouse models of PD and SCA. Netherlands Portugal Sweden Portugal Finland FinMIT laboratories, IBT Tampere Drosophila models of various diseases. Finland Galway Neuroscience Cluster Various models of Parkinson s disease. Ireland The Harwell Frozen embryo and sperm archive (FESA) Mouse repository holding animals, frozen embryos and sperm. Holds models of MND, Prion disease, PD, HD, SCA and SMA plus multiple other models with cognitive, motor, physiological or other deficits. UK OVOCURA, Wroclaw Medical University Trinity College Institute of Neuroscience Mouse and rat models of AD. Mouse models of delirium during dementia and models of acute working memory dysfunction. Poland Ireland UCL-IoNS-Alzheimer Research Group GM models of AD plus PD model(s). Belgium Table 12: Summary of animal model repositories captured. Page 16 of 46

17 Bio/neuroinformatic resources Bio/neuroinformatic resources were broadly defined as databases, networks, or infrastructures to share or distribute data relevant to ND or to develop/provide computational or analytical tools to acquire, store, organise, archive, analyse, or visualise such data. AD MND Prion PD HD SCA SMA ND gen Table 13: Bio/neuroinformatic resources relevant to specific ND: The total number of bio/neuroinformatic was 24; some are relevant to more than one ND. Details of 24 resources were captured during the exercise and could broadly be assigned to five different groups. Neuroinformatics: 3 General bioinformatics: 5 Genomics and sequencing: 3 Neuroimaging/imaging: 6 Clinical/social data: 7 Page 17 of 46

18 4. Research Funding Country Specific Information Headline funding totals and analysis and for JPND member countries at 1st January 2011 and the EC/ERC collected during the 2011 mapping exercise is provided below. Where supplied by the designated JPND mapping contact/management Board member(s), a commentary giving some context to the figures and outlining the funding landscape has been included. Note: for two JPND Member Countries (Greece and Hungary) additional funding data was provided subsequent to the mapping analysis presented in the main report. Detail is provided in the Commentary section for both countries, but this funding was not included in the overall figures outlined in the Mapping Exercise Results section, and has not been validated by the JPND co-ordinating team. 4.1 Albania No funding data or commentary supplied. Page 18 of 46

19 4.2 Belgium Organisations providing funding data: EWI: Economy, Science and Innovation Fonds de la Recherche Scientifique (FNRS) No. projects Full value ( ) % Per year ( ) % Total research funding ,517,557-7,061,052 - Major investments 1 668, ,467 2 Smaller projects ,848, ,949, Basic ,517, ,061, Clinical Health and social care Annualised spend by disease for major projects: Disease No. projects Per year ( ) % Spinal muscular atrophy 1 111, Commentary In Belgium there are no dedicated research programmes, science policy is according to the bottom up principle and selection of funded projects according to excellence and/or valorisation criteria. In Flanders additional funding is governed by the universities, including BOF (Special research fund) and IOF (Industrial research fund) funding. Organisations funding research in this area: BioWin EWI: Economy, Science and Innovation Fonds de la Recherche Scientifique (FNRS) Fonds Wetenschappelijk Onderzoek (FWO): Agentschap voor Innovatie door Wetenschap en Technologie (IWT): In terms of the 2011 mapping exercise, research funding from FWO and IWT are not complete. Page 19 of 46

20 4.3 Czech Republic Organisations providing data information: Ministry of Education, Youth and Sports No. projects Full value ( ) % Per year ( ) % Total research funding 3 82,000-27,333 - Major investments Smaller projects 3 82, , Basic 3 82, , Clinical Health and social care Page 20 of 46

21 4.4 Denmark Organisations providing funding data: The Danish National Advanced Technology Foundation Lundbeck Foundation The Strategic Research Council VELUX Foundation No. projects Full value ( ) % Per year ( ) % Total research funding ,020,141-7,645,825 - Major investments 4 8,906, ,941, Smaller projects 96 17,113, ,704, Basic 78 18,617, ,414, Clinical 22 7,402, ,230, Health and social care Annualised spend by disease for major projects: Disease No. projects Per year ( ) % Alzheimer s disease 4 1,036, Parkinson s disease 2 282, ND in general 2 622, Page 21 of 46

22 4.5 Finland Organisations providing funding data: Academy of Finland Kuopio University Hospital (PSSHP) Tekes No. projects Full value ( ) % Per year ( ) % Total research funding 69 13,339,690-4,230,563 - Major investments 1 1,620, ,000 8 Smaller projects 68 11,719, ,906, Basic 28 9,399, ,917, Clinical 40 3,889, ,296, Health and social care 1 50, , Annualised spend by disease for major projects: Disease No. projects Per year ( ) % Parkinson s disease 1 324, Commentary The main funding agencies in Finland are Academy of Finland and Tekes - the Finnish Funding Agency for Technology and Innovation: Page 22 of 46

23 4.6 France Organisations providing funding data: Agence Nationale de la Recherche AFM-Téléthon ARSLA Fédération pour la Recherche sur le Cerveau Inserm La Ligue Européenne Contre la Maladie d Alzheimer No. projects Full value ( ) % Per year ( ) % Total research funding ,445,121-22,919,243 - Major investments 34 35,798, ,370, Smaller projects ,646, ,548, Basic ,439, ,917, Clinical 68 20,728, ,909, Health and social care 14 3,277, ,092,545 5 Annualised spend by disease for major projects: Disease No. projects Per year ( ) % Alzheimer s disease 23 10,195, Motor neurone disease 2 403, Parkinson s disease 5 993,979 8 Prion disease 3 609, Spinocerebellar ataxia 1 168, Commentary To date, given both the information required by the mapping exercise database and the special status of French scientific and technological public institutions (i.e. Inserm, CNRS), financial data (recurrent budget and staff salaries) from several research teams of these institutions could not be filled in the database. Besides, data for some programs and foundations are not available. Therefore, investments listed for France are underestimated. Page 23 of 46

24 4.7 Germany Organisations providing funding data: Alfred Krupp von Halbach Foundation Deutsche Alzheimer Gesellschaft Deutsche Forschungsgemeinschaft (DFG) Forschung und Therapie fuer SMA Deutsche Gesellschaft fuer Muskelkranke Federal Ministry of Education and Research (BMBF) Hans und Ilse Breuer Stiftung Helmholtz Society Robert Bosch Stiftung Volkswagen-Stiftung No. projects Full value ( ) % Per year ( ) % Total research funding ,465, ,608,382 - Major investments ,523, ,627, Smaller projects ,942, ,980,716 8 Basic ,324, ,923, Clinical 14 34,559, ,063,307 6 Health and social care 54 8,581, ,621,231 2 Annualised spend by disease for major projects: Disease No. projects Per year ( ) % Alzheimer s disease 29 19,048, Huntington s disease 1 363, Motor neurone disease 1 367, Parkinson s disease 12 7,611,016 7 Prion disease 1 151, ND in general 1 82,086, Page 24 of 46

25 4.8 Greece No funding data supplied via web-based mapping survey. Some funding data was provided subsequently (see Commentary section, below) but this was not included in the overall figures outlined in the Mapping Exercise Results section, and has not been validated by the JPND co-ordinating team. Commentary Organisations supporting relevant research in Greece are: General Secretariat for Research and Technology, Ministry of Education Details of relevant funding are given in the table below. Two of the projects run in the context of the Bilateral S&T agreement between Greece-France and two are funded by the national programme Cooperation I which also involves private companies. The overall total of 1,873,430 includes 367,070 of private funding. No. projects Full value ( ) % Per year ( ) % Total research funding 4 1,873, , Major investments 2 1,833,430 97,86 733, Smaller projects 2 40,000 2,13 16, Basic 4 1,873, , Clinical Health and social care Annualised spend by disease for major projects: Disease No. projects Per year ( ) % Alzheimer s disease 1 16, Motor neurone disease 1 328, ND in general 2 405, Page 25 of 46

26 4.9 Hungary No funding data was supplied at the close of mapping survey. Some funding data was subsequently provided (see Commentary section, below) but this was not included in the overall figures outlined in the Mapping Exercise Results section, and has not been validated by the JPND co-ordinating team. Commentary In Hungary there are no programmes specifically dedicated to neurodegenerative disease research. There are different programmes/subprogrammes for life sciences and health within which projects relating to neurodegenerative disease research can be funded. Therefore the amount of funding relevant to neurodegenerative diseases varies year by year. Organisations supporting relevant research in Hungary are: Hungarian Scientific Research Fund (OTKA) National Innovation Office (NIH) Relevant funding live at the beginning of 2011 was estimated to be: No. projects Full value ( ) % Per year ( ) % Total research funding 11 1,490, ,000 - Major investments Smaller projects 11 1,49, , Basic 6 600, , Clinical 5 890, , Health and social care For projects of over 200,000, two were specifically relevant to Alzheimer s disease (annualised total of 160,000) and one each for Parkinson s disease and ND in general (annualised total of 70,000). Page 26 of 46

27 4.10 Ireland Organisations providing funding data: Alzheimer s Society The Atlantic Philanthropies CARDI Health Research Board Science Foundation Ireland No. projects Full value ( ) % Per year ( ) % Total research funding 44 21,358,597-5,878,869 - Major investments 9 13,871, ,383, Smaller projects 35 7,487, ,495, Basic 31 17,332, ,486, Clinical 5 3,235, , Health and social care 8 791, ,492 9 Annualised spend by disease for major projects: Disease No. projects Per year ( ) % Alzheimer s disease 7 2,350, Motor neurone disease 1 338, ND in general 1 694, Page 27 of 46

28 Commentary The three largest funders of current ND research in the Republic of Ireland are the SFI, HRB and The Atlantic Philanthropies. Science Foundation Ireland invests in academic researchers and research teams who are most likely to generate new knowledge, leading edge technologies and competitive enterprises in the fields of science and engineering underpinning three broad areas: Biotechnology Information and communications technology Sustainable energy and energy-efficient technologies SFI makes grants based upon the merit review of distinguished scientists. SFI also advances co-operative efforts among education, government, and industry that support its fields of emphasis and promotes Ireland s ensuing achievements around the world. The Health Research Board is the lead agency in Ireland supporting and funding health research. The HRB mission is to improve people s health, patient care and health service delivery by: leading and supporting excellent research by outstanding people within a coherent health research system; generating knowledge and promoting its application in policy and practice; and, in doing so, play a key role in health system innovation and economic development. From HRB funding will focus on supporting excellent clinical and applied biomedical research and building capacity to conduct high-quality population health research and health services research. HRB supports people, projects and infrastructures, and awards grants based on international peer review. The Atlantic Philanthropies Ageing Programme in the Republic of Ireland supports efforts to prevent or delay the onset of dementia and to promote mental health in disadvantaged older adults, and to strengthen the capacity of the age sector by building the evidence base for changes in policy and practice as well as encouraging collaboration among nonprofits and other partners. The Alzheimer s Society is a national voluntary organisation with an extensive national network of branches, regional offices and services that aims to provide people with all forms of dementia, their families and carers with the necessary support to maximise their quality of life. The Society supports research to explore and highlight the needs of people living with dementia in Ireland as well as those of their families and carers. CARDI is a not for profit organisation established to advocate for and advance the ageing research agenda by identifying, coordinating, stimulating, and communicating strategic research on ageing and older people as a means to improve the lives of older people in Ireland (North and South) especially those who are disadvantaged. Page 28 of 46

29 4.11 Italy Organisations providing funding data: The Agency for Research on Amyotrophic Lateral Sclerosis Consiglio Nazionale delle Ricerche Famiglie SMA MIUR Telethon Foundation No. projects Full value ( ) % Per year ( ) % Total research funding 28 19,673,648-4,744,549 - Major investments 6 14,102, ,887, Smaller projects 22 5,571, ,857, Basic 23 17,934, ,298, Clinical 5 1,739, ,350 9 Health and social care Annualised spend by disease for major projects: Disease No. projects Per year ( ) % Alzheimer s disease 1 167, Motor neurone disease 1 160, Prion disease 1 160, ND in general 3 2,400, Page 29 of 46

30 4.12 Luxembourg Organisations providing funding data: National Research Fund No. projects Full value ( ) % Per year ( ) % Total research funding 2 991, ,333 Major investments 1 650, , Smaller projects 1 341, , Basic 2 991, , Clinical Health and social care Annualised spend by disease for major projects: Disease No. projects Per year ( ) % Alzheimer s disease 1 108, Parkinson s disease 1 108, Commentary The data reflects programmes or research grants for the given timeframe that can be classified under the definition of major investments ie. exceeding 500,000 for basic or clinical research or exceeding 200,000 for health and social care research. This does not include major investment in the form of infrastructural investments and basic institutional funds etc. It does also not include a relatively large volume of PhD and postdoctoral grants which individually fall outside of the definition of major investment. Page 30 of 46

31 4.13 Netherlands Organisations providing funding data: Azheimer Nederland National Initiative Brain and Cognition Netherlands Organisation for Health Research and Development (ZonMw) No. projects Full value ( ) % Per year ( ) % Total research funding ,931,384-14,275,429 - Major investments 43 51,025, ,640, Smaller projects 73 10,906, ,635, Basic 33 32,695, ,663, Clinical 56 16,173, ,815, Health and social care 26 13,062, ,796, Annualised spend by disease for major projects: Disease No. projects Per year ( ) % Alzheimer s disease 35 9,248, Parkinson s disease 4 395,265 4 ND in general 6 996,266 9 Commentary The survey was conducted by de Netherlands Organisation for Health Research and Development (ZonMw) in collaboration with Alzheimer Nederland and the National Initiative Brain and Cognition. After joint efforts, the given response was sufficient, resulting in a survey of 43 major investments and 73 smaller projects. The main part of the funding is about basic, the other fourth quarters are about clinical and health and social care. The main funding resources for ND-research are government, academia (including private funding) and Alzheimer Nederland. Currently (the first half of 2012) a public-private partnership is being established to, amongst others, promote and intensify ND-research for an initial period of 8 years. The resulting programme should be launched in the autumn of Page 31 of 46

32 4.14 Norway Organisations providing funding data: The Norwegian Extra Foundation for Health and Rehabilitation The Research Council of Norway South-eastern Norway Regional Health Authority Western Norway Regional Health Authority No. projects Full value ( ) % Per year ( ) % Total research funding 42 23,236,000-5,723,402 - Major investments 12 14,027, ,653, Smaller projects 30 9,209, ,069, Basic 18 7,794, ,243, Clinical 18 13,162, ,856, Health and social care 6 2,280, , Annualised spend by disease for major projects: Disease No. projects Per year ( ) % Alzheimer s disease 5 881, Parkinson s disease 3 1,008, Prion disease 1 88, ND in general 4 676, Page 32 of 46

33 Commentary The information presented in the report and the resources currently accessible via the database do not give the complete picture for Norway and need to be seen as examples of Norwegian research relevant into JPND. Please search the following links in order to find research projects (mainly) and resources of interest funded by Norwegian funder organizations: The Research Council of Norway: orsk%2fhovedsidemal&cid= The Norwegian Extra Foundation for Health and Rehabilitation: Western Norway Regional Health Authority: South-eastern Norway Regional Health Authority: Central Norway Regional Health Authority: Northern Norway Regional Health Authority: Page 33 of 46

34 4.15 Poland Organisations providing funding data: Foundation Parkinson Medical Research Center of the Polish Academy of Sciences Ministry of Science and Higher Education (MNiSW) National Centre for Research and Development (NCBiR) No. projects Full value ( ) % Per year ( ) % Total research funding 38 3,563,750-1,187,917 - Major investments Smaller projects 38 3,563, ,187, Basic 30 2,526, , Clinical 7 1,036, , Health and social care 1 1, Page 34 of 46

35 Commentary Since 1 October 2010 the funds from state budget for supporting science have been channelled through three institutions: Ministry of Science and Higher Education (MNiSW) and two government agencies - National Centre for Science (NCN) and National Centre for Research and Development (NCBiR). MNiSW provides financing for statutory R&D activities of research institutes and department of universities, R&D infrastructure (such as building and equipment), international projects within bilateral cooperation or under FP7, promotion of science and dissemination of research results, fellowships for distinguished young scientists and students, Minister s programmes addressed to aims of scientific policy, for example development of humanities. Applications for funds are evaluated by groups of experts. More information: NCN supports basic research in the form of country or international research projects, doctoral fellowships and post-doctoral internships, research projects carried out by experienced researchers aimed at implementing pioneering research important for the development of science. One of priorities is supporting the scientific career of young researchers at least 20% of the budget is addressed to that group of scientists. More information: NCBiR supports innovative research projects within strategic high budget programmes addressed to social and economic development of the country. Moreover the agency co-funds international programmes and projects, for example ERA-NET NEURON, AAL (Ambient Assisted Living), JPND projects on the optimisation of biomarkers and harmonisation of their use between clinical centres. ( More information: Public funds are distributed by funding agencies in a competitive procedure, mostly with top-down approach in NCBiR and bottom-up approach in NCN. Neurodegeneration research is supported by all funding bodies mentioned above, but there is not any specific programme dedicated neurodegenerative diseases. Page 35 of 46

36 4.16 Portugal Organisations providing funding data: Foundation for Science and Technology (FCT) No. projects Full value ( ) % Per year ( ) % Total research funding 34 4,698,000-1,566,000 - Major investments Smaller projects 34 4,698, ,566, Basic 24 3,336, ,112, Clinical 9 1,282, , Health and social care 1 80, ,667 2 Commentary Fundação para a Ciência e a Tecnologia (FCT) is Portugal s main funding agency for research and it is responsible for following the bilateral and multilateral international agreements in science and technology. It is a public autonomous agency under the aegis of the Ministry of Education and Science, covering all scientific domains, in a responsive mode, aiming at capability enhancement and research excellence. Funding is structured around the following schemes: promotion of training and career development, support of centres of excellence and research centres, support to infrastructure, promotion and development of scientific activity (research projects) and diffusion of scientific culture ( The indicated numbers refer to FCT funding of projects in ND. Besides this, FCT also supports one centre of excellence especially dedicated to Neurosciences as well as specialized infrastructures and human resources furthering ND research. In 2010 approx. 1% of the total budget (~5% of the Health Sciences budget) was allocated to ND. Page 36 of 46

37 4.17 Slovak Republic Organisations providing funding data: Ministry of Education, Science, Research and Sport of the Slovak Republic No. projects Full value ( ) % Per year ( ) % Total research funding 7 460, ,333 - Major investments Smaller projects 7 460, , Basic 7 460, , Clinical Health and social care Page 37 of 46

38 4.18 Slovenia Organisations providing funding data: University Medical Center in Ljubljana No. projects Full value ( ) % Per year ( ) % Total research funding 6 1,321, ,524 - Major investments Smaller projects 6 1,321, , Basic 4 1,021, , Clinical 2 300, , Health and social care Page 38 of 46

39 4.19 Spain Organisations providing funding data: Centre for Technological Development (CDTI) CIEN Foundation - Reina Sofia Foundation FundAME Instituto de Salud Carlos III No. projects Full value ( ) % Per year ( ) % Total research funding ,158,198-14,651,652 - Major investments 3 40,858, ,218, Smaller projects ,299, ,433, Basic 37 45,714, ,837, Clinical 99 11,443, ,814, Health and social care Annualised spend by disease for major projects: Disease No. projects Per year ( ) % Alzheimer s disease 2 2,672, ND in general 2 6,546, Page 39 of 46

40 4.20 Sweden Organisations providing funding data: Hjarnfonden Swedish Council for Working Life and Social Research Swedish Foundation for Strategic Research Swedish Research Council VINNOVA No. projects Full value ( ) % Per year ( ) % Total research funding ,245,140-12,001,958 - Major investments 22 15,590, ,116, Smaller projects ,655, ,885, Basic ,209, ,527, Clinical 32 6,370, ,875, Health and social care 8 2,665, ,852 5 Annualised spend by disease for major projects: Disease No. projects Per year ( ) % Alzheimer s disease 9 1,214, Huntington s disease 2 133,368 3 Parkinson s disease 13 2,263, ND in general 4 504, Page 40 of 46