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Registries, Databases & Clinical Networks

Registries, Databases & Clinical Networks. David J Burn Newcastle University. Introduction. Prevalence multicentre studies essential Therapeutic window sensitivity vs. specificity Phenotypic variability Biomarkers & biobanking Patient-led vs . clinician case ascertainment.

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Registries, Databases & Clinical Networks

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  1. Registries, Databases & Clinical Networks David J Burn Newcastle University

  2. Introduction • Prevalence • multicentre studies essential • Therapeutic window • sensitivity vs. specificity • Phenotypic variability • Biomarkers & biobanking • Patient-led vs. clinician case ascertainment

  3. Registries & Databases • What are they for? • Who will use the data? • accessmodel • Feasible? • Current? • Confidential / secure?

  4. Research & Feasibility Tool (RAFT) • NIHR-DeNDRoN initiative • Anyone interested in participating in dementia research registers details either online or via a telephone helpline • Researchers use the system to establish whether their research proposal is feasible, based on the number of potentially suitable candidates registered& recruit appropriate candidates to their studies • System developed in conjunction with key stakeholders including Alzheimer’s Society, Alzheimer’s Research UK, people affected by dementia, researchers & NHS • Further development of the system will include linkage to NHS electronic patient records & integration with existing local research registers

  5. EMSA Network • Founded in January 1999 • A consortium of scientific investigators from academic & research centres in Europe / Israel • Aims to advance knowledge about the aetiology & pathogenesis of MSA • EMSA-SG works with government & industry sponsors to develop & implement novel therapeutic interventions www.emsa-sg.org/

  6. UK MSA Network • Lead: Henry Houlden • Funder: MSAT • Longitudinal clinical & imaging database & sample biobank • Outcomes: • open access database • well phenotyped cohort • platform for trials / biomarkers • global networking • EMSA, MoDiMSA

  7. UK MSA Network: Main Aims • Recruit patients at all stages of MSA but with focus on early stage disease (UK MSA Register & Database) • clinical, demographic & environmental information • annual information on disease progression, milestones & quality of life • request for brain issue donation • Collate serial MRI imaging, FP-CIT SPECT scan, autonomic etc. for each patient • Collect blood for DNA, RNA, serum / protein ± CSF at diagnosis & two years later (UK MSA Biobank) • identification of future disease biomarkers to improve early diagnosis • develop surrogate markers of disease progression

  8. Evolving the NIHR Clinical Research Network From To 15 local networks Full geographical cover for all diseases 1 coordinating centre Consistent, coherent procedures & processes • 102 local networks • Partialgeographical coverage for many diseases • 8 coordinating centres • Different operating procedures & processes • Why? • Easy to understand for external stakeholders • All clinical themes supported in all locations • Flexibility to operate effectively with the changing NHS • More effective learning organisation

  9. Supporting PD & Movement Disorders Research from April 2014 • Full national coverage from 15 Local Clinical Research Networks covering the whole of England • At both national and local level there will be six research delivery divisions, each covering a set of related specialties • Dementia & Neurodegeneration, Mental Health andNeurological Disorders will be in a single research delivery division • PD will be part of the Dementia & Neurodegeneration (DeNDRoN) specialty

  10. Growth in NIHR PD activity 2006 - 2013

  11. From April 2014 • DeNDRoN CC continue to provide national support for research delivery • DeNDRoN LRNs being incorporated into new LCRNs • Staff transferring to new organisations • Business as usual • Opportunities: in all locations, to learn from others, to further develop resources to support Movement Disorder research

  12. What Does All this Mean for MSA? • Continued availability to support delivery of MSA studies • UK MSA Network • recruitment & delivery of trials • The PD-CSG is dead; long live the PD-CSG • links with Parkinson’s UK? • new investigator-led studies • ABN-MD Special Interest Group

  13. Conclusion • 2014-15 is a time of change • Exciting opportunities for MSA research • UK MSA Research Network • Maximise strategic links with: • NIHR CRN / DeNDRoN • Parkinson’s UK • global networks

  14. Current BritMODIS Structure

  15. BritMODIS: A Group for PD Training, Education & Research Regional representation mapping to LCRNs where possible

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