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Advancements in MSA Research: Clinical Registries and Collaborative Networks

This document outlines the significance of registries and databases in advancing research on Multiple System Atrophy (MSA). It discusses the prevalence of MSA, the essential role of multicenter studies, and the importance of sensitive and specific biomarkers. The NIHR-DeNDRoN initiative and UK MSA Network aim to enhance research feasibility by linking clinical data with biosample collection. The document emphasizes patient-led case ascertainment and collaborative efforts among stakeholders to improve early diagnosis and therapeutic interventions for MSA. Exciting opportunities for research evolution are also highlighted.

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Advancements in MSA Research: Clinical Registries and Collaborative 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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