Development of NEURODEM Cymru

Key Activities

• Maintenance and continued growth of NEURODEM Cymru as a strong, collaborative, open and inclusive network.
• Maintenance and development of constructive, collaborative working relationships with other groups in NISCHR.

• Maintenance and development of effective joint working with the UK Clinical Research Network’s Dementias and Neurodegenerative Diseases Research Network [DeNDRoN].

• Act as conduit for research and clinical teams in Wales regarding industry studies being considered by DeNDRoN for adoption.

• Facilitating representation from Wales on DeNDRoN’s UK Clinical Study Groups for research in dementias and neurodegenerative diseases.

• Establishment and facilitation of Research Development Groups, led from Wales, to support the development of proposals for research funding. These may include time-limited groups to work on a specific proposal.
• To encourage researchers in Wales undertaking research on the dementia and neurodegenerative diseases to register their studies with the appropriate portfolio, and, where appropriate, supply accrual and recruitment data.
• To encourage additional NHS and social care sites to consider taking part in research studies.
• To encourage new researchers, including those undertaking related doctoral research, through providing opportunities for networking and dissemination, and assistance with preparing proposals for research grants.
• Arrange conferences and seminars on relevant topics, where appropriate in conjunction with other organisations, to maximise the impact of research undertaken, to strengthen links with policy and practice and with patients and carers.
• Maintain and further develop databases of potential participants for research studies, in order to underpin portfolio development and grant capture.
• To liaise with ‘Involving People’ and the Wales Neurological Alliance, to ensure that the relevant patient/carer organisations and patients/carers receive the information, support and opportunities needed to enable their involvement at every stage of the research process.
• To contribute an evidence-based perspective to related policy and practice initiatives in Wales and the UK, where appropriate.
• To maintain and develop an effective web-site and relevant publications to support these activities.

   Highlights

 

• NEURODEM Cymru contributed to all phases of the work in preparation for a Wales Dementia Action Plan, which was announced by the Minister for Health on May 12th. Professors Bob Woods and Julie Williams took part in working groups meeting in March 2010. The action plans placed on the WAG web-site include a number of actions specifying the involvement of NEURODEM Cymru. We look forward to discussions with NISCHR regarding the implementation of these aspects of the Plan, especially in the light of the UK Government’s stated intention to prioritise dementia research.

 

• NEURODEM Cymru was actively involved in the UK Ministerial Dementia Research Summit in July 2009, and is monitoring actions arising from this. NISCHR have been alerted to a Ministerial Working Group on dementia research, which includes a number of interested parties, but which has not had representation from Wales.

 

• Meetings of Brain imaging (jointly with MHRN-C) and Neurorehabilitation RDGs have been held during the reporting period.

 

• A joint conference was held in North Wales in April 2010 on younger people with dementia, attended by over 120 people.

 

• Positive funding decisions have been received relating to a number of new projects, which will appear on the portfolio in due course. These include: a collaboration with OPAN: ‘Maintaining function and well-being in later life: a longitudinal cohort study’, funded by the ESRC from its large project competition 2009, with input from HEFCW; the HTA funded MUSTARD trial of rivastigmine for dementia in Parkinson’s; and a trial of individual cognitive stimulation, also funded by the HTA.

 

• A third NIHR Programme grant on dementia care has commenced, incorporating dementia trials expertise from Wales. The WHELD study, led by Jane Fossey from Oxford NHS and Clive Ballard from Kings College London, will look at ways to improve quality of life and reduce anti-psychotic use in care homes. Bob Woods and NWORTH again provide specific dementia expertise, in relation to development and evaluation of complex interventions.

 

• The 2010 NEURODEM Conference is planned to be held in Cardiff on 13th/ 14th October.