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JPND CALL FOR EXPERT WORKING GROUPS ON “CONCEPTS FOR HEALTH AND SOCIAL CARE RESEARCH FOR NEURODEGENERATIVE DISEASES”

AN EXPERT WORKING GROUPS CALL ON “CONCEPTS FOR HEALTH AND SOCIAL CARE RESEARCH FOR NEURODEGENERATIVE DISEASES”

On 2nd November 2022, the EU Joint Programme – Neurodegenerative Disease Research (JPND) initiative launched a multinational rapid-action call for expert Working Groups for “Concepts for health and social care research for neurodegenerative diseases”.

While there have been developments towards living better with neurodegenerative diseases, most available interventions and support are intended for patients who are newly diagnosed. There still is a relative lack of research and supply for patients, particularly at moderate, advanced and end of life stages of disease progression. Affected people face a reduced ability to manage daily-life challenges along with a loss of independency, social participation and dignity. In addition, they often suffer from social isolation and restrictions regarding personal support as a consequence of the still ongoing pandemic. The factors that contribute to social inclusion, civic participation, dignity and quality of life for these patients and their families are not fully understood.

In consequence, the supply offered by the health care systems of individual countries, if any, does not adequately meet the needs of patients. Furthermore, the availability of and the access to support varies considerably across Europe and beyond and there is inefficient and inequitable coordination between health and social care systems. Deeper analysis of the strengths and weaknesses of existing supply, the social factors contributing to cognitive decline or stability as well as new concepts and ideas for enhancing health and social care are therefore needed in order to assess the problems and needs of patients, carers and relatives.

To address this challenge, JPND has launched a call for leading scientists in the field to establish community-led Working Groups dedicated to discuss and align the specific needs of patients and currently available supply by the health and social care system, thereby outlining strategies to improve support for people at moderate, advanced and end of life stages of disease progression.

Participating Funding Organisations

The funding organisations participating in this call that have agreed to provide financial support for Working Groups are listed below:

Canada, Canadian Institutes of Health Research (CIHR)
France, French National Research Agency (ANR)
Germany, Federal Ministry of Education and Research (BMBF)
Italy, Ministry of Health (IT-MOH)
Ireland, Health Research Board (HRB)
Netherlands, The Netherlands Organisation for Health Research and Dev. (ZonMw)
Norway, The Research Council of Norway (RCN)
Sweden, Swedish Research Council for Health, Working Life and Welfare (FORTE)