Chair: Professor Paul Ince, University of Sheffield
Vice Chair: Professor Jim Lowe, University of Nottingham
UK Neuropathology has had a
disproportionately large impact on the research agenda in dementia and
neurodegeneration. This CSG, representing comprehensive cover of existing UK
Brain Banks, provides a platform to maintain this competitive position. The Clinical Studies Group plans
to:
Embed a culture of network
cooperation, enabling research studies and trials to utilise resources
nationally so that tissue can be collected and processed for use at other
centres
Encourage and facilitate brain
pathology as a ‘routine’ endpoint in clinical research
Develop regional and sub-regional
access for multi-centre trials and studies
Develop activity to acquire
control tissue and 'mental health' donations
Develop secure resources for
common standards and access in UK
brain banking
Clinical research in
neurodegeneration is moving towards disease modification (for example, trials
of immunotherapy in Alzheimer’s disease). Pathology endpoints will greatly
enhance trials in this area. Clinical diagnostic criteria applied in the most
optimal settings for many disorders often show only 80 per cent accuracy
compared with final pathological diagnoses. For large studies conducted across
various clinical settings, including primary care, the issue of potential
misdiagnosis is significant. Diagnostic audit based on autopsy diagnosis will
contribute significantly to quality control of clinical research in DeNDRoN. Acquisition of control CNS tissue
for research is a major problem across the UK.
The MRC-led Fundholder Strategy Group has identified this as a key objective in
focussing any new resources. The CSG will work to deliver this and related key
objectives. The CSG is also working with existing organisations and initiatives
Brain UK
(led by Professor James Nicoll) plans to facilitate use of existing archives of
tissue in NHS neuropathology departments as a resource for clinical
neuropathology research.
Brain Net Europe 2: The CSG does
not need to develop issues around governance, quality and best practice,
because groups such as Brain Net Europe 2 have already done this. We will
explore the possibility of using the Brain Net Europe 2 database rather than
creating a new system.
Autopsy liaison staff comprise
key personnel in Brain Banking. We need a more robust approach to core funding
that enables this role to extend beyond those brain banks funded by MRC or
medical charities to broaden the geographical coverage of UK
diagnostic services and brain banking in dementia and neurodegeneration.
Developing the research agenda
The group will identify
priorities for tissue-based studies in dementia and neurodegeneration, and
promote brain tissue based research as a major part of the added-value of
clinical studies in UK.
Inter-network development
neuropathology research and brain banking lies. However brain banks facilitate
work in mental health (for example schizophrenia and bipolar disorder) even
when this is not their primary focus. We will collaborate with the stroke and
mental health networks to promote tissue banking for those disorders.This CSG was established within
DeNDRoN because this is where the ‘centre of gravity’ of UK
Rather than developing parallel
CSGs across multiple research networks it is more efficient to develop working
groups in different areas within the DeNDRoN CSG for neuropathology and brain
banking.