ERA-NET JPco-fuND : Multinational research projects on Health and Social Care for Neurodegenerative Diseases

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Domaine de recherche :
Type de financement :
Type d'instrument :
N / A
Deadline :
Mercredi 27 Juin 2018
1ère partie : 6 mars 2018
Code de l'appel : ERA-NET JP CO-FUND
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Aim of the call

The aim of the call is to establish a limited number of ambitious, innovative, multi-national and multi-disciplinary collaborative research projects that address health and social care delivery at the macro level  (system  and  infrastructures) as  well  as (at) the  individual  level  of patients,  their  carers and families. Evaluating  the  strengths  and  weaknesses  of  formal  and  informal  care  approaches  and existing infrastructures is a  prelude  to  implementing  improved,  evidence-based approaches and thereby improving the quality of life for those affected by neuro degenerative diseases and the quality of care. Most health and healthcare research would be impossible without the active involvement of patients. Thus, JPND has determined that Patient and Public Involvement (PPI) should be an integrated part of the implementation of its Research and Innovation Strategy. Proposals to be funded under this call will therefore need adequately to involve patients, carers and the public. Consortia are expected to make every effort to include PPI approaches, where appropriate, at each stage of the research process including the preparation of the application (see the JPND website for further information). In the application it must be described in which step of the research process patient or relatives will be,  or  already  are, involved  and  which  roles  they  would  play.  If possible,  patient representatives should be consulted from each of the countries that participate in the consortium. If a PPI approach is not fitted, this must be justified.Proposals  on  health  and  social  care  can  apply  to  patients  with  any  or  several  of  the following neurodegenerative diseases:

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

Proposals submitted under this call will include, but are not limited to, the research are a slisted below. Proposals can focus on one or several of these areas:

  • Care pathways and services using the potential of patient involvement. Among others, benefits and harms of advance care planning and the ethical issues involved ;  identification of transitions along the disease trajectory in terms of quality of life and carers’ capacity  to  provide  support,  including support from civic voluntary carers; observational studies of needs, strengths, preferences and values of people affected by disease and carers including   knowledge   about suicidal   behavioral  and  risk  of suicide among  patients; individualisation of  supporting  technologies  to  reflect  and  respond  to  the  enormous heterogeneity of need, abilities and preferences of patients and carers.
  • Factors influencing progression and prognosis of disease. Among   others,   interplay   of   social factors   in   combination   with economic, cultural, environmental and biological factors in the determination of cognitive decline, behavioral and psychological  symptoms, self-estimation  of  coping, well-being  and  disease  progression, quality of life; repurposing of data available through existing cohorts to adopt and integrate new  procedures  to  study  the  interplay of  social  factors  in  combination  with  economic, environmental  and  biological  factors and  changes  over  time;  prevention  of  incriminating consequences of disease including the influence of social responses to disease progression and symptoms.
  • Outcome measures for patients and their informal carer. Among others, measures (identification) of effective factors emphasizing positive outcomes such as autonomy, protection, resilience, dignity, opportunity for reciprocity, use of cognitive reserve  and health related  quality  of  life  and  broader  well-being  to  better  reflect  individual strengths and aspirations throughout the entire course of the disease from first symptoms to end of life.
  • Palliative care of patients. Among others, development, investigation and implementation of global quality indicators on palliative  care  while  considering  barriers  and  facilitators  in  providing care  and  utilizing indicators; identification of the end of life phase and use of advance care planning to improve the quality of life and the quality of dying.
  • Cost-effectiveness and affordability of interventions including ethical concerns. Among others, equity of access to and the effectiveness and cost-effectiveness of pathways to prevention, diagnosis,   treatment,   care,   follow-up and   support   across   countries ; transferability of current hospice care models into social care situations and the ethical issues involved.


Proposals should have novel, ambitious aims and ideas combined with well-structured work plans and clearly defined objectives deliverable within three years. Each consortium should have the critical mass to achieve ambitious scientific goals and outline the added value of working together. Applicants should demonstrate that they have the expertise and range of skills required to conduct the study or that appropriate collaborations are in place. The added value to ongoing activities and the expected impact on future health and social care for people suffering from neurodegenerative diseases should be explicitly stated. Appropriate access to and synergistic usage of resources, e.g. data from patients and health care providers, existing population and disease specific cohorts and registries or connections to health records, is expected. Data, tools and resources being generated within the research projects should be made widely available to the public domain, taking into account legal and ethical requirements, to increase  their  added  value.  Access  must  be  provided  to  other  bona  fide  research  groups. Consortia are strongly advised to define arrangements to deal with this issue across countries, while preserving integrity of study subjects. Proposals should address socio-economic   factors,   gender related   research   questions and comorbidities, where appropriate.

Consortia should incorporate these factors when formulating their research hypotheses, aims and work plans. Considering cross-cultural issues and diversity, particularly when developing and implementing instruments and intervention strategies, should be ensured across research efforts. Training   of   young   researchers   and  mobility   (e.g.,   researcher   exchanges for   students   and postdoctoral researchers) within the consortia are encouraged, where this can be specifically justified in terms of the training opportunities provided to the individual and the needs of the field.

Please note that there may be restrictions according to national regulations. To have an impact at European and partner    country    levels,    it    is    expected    that    all    proposals    will    link    activities    across laboratories/clinics/care settings within JPND member countries.

Proposals are encouraged to import expertise from areas outside of neurodegeneration research, e.g. from primary care, memory units or sentinel networks, which can bring innovation to the approach to be pursued. The case must be made for the added value that will be provided by the collaboration on a multidisciplinary level.