Registries, Databases & Clinical Networks

David J BurnNewcastle University

Introduction

Viable neuronal

population

Diagnostic certainty

• Prevalence– multicentre studies essential

• Therapeutic window– sensitivity vs. specificity

• Phenotypic variability• Biomarkers & biobanking• Patient-led vs. clinician case

ascertainment

Registries & Databases

• What are they for?• Who will use the data?– access model

• Feasible?• Current?• Confidential / secure?

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

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/

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

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

Evolving the NIHR Clinical Research Network From• 102 local networks• Partial geographical

coverage for many diseases• 8 coordinating centres• Different operating

procedures & processes

To• 15 local networks• Full geographical cover for

all diseases• 1 coordinating centre• Consistent, coherent

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

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 and Neurological Disorders will be in a single research delivery division

• PD will be part of the Dementia & Neurodegeneration (DeNDRoN) specialty

Growth in NIHR PD activity 2006 - 2013

06/07 07/08 08/09 09/10 10/11 11/12 12/130

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RecruitmentTrustsStudiesPIs

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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

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

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

Current BritMODIS Structure

IPMDS BritMODIS

ABN MD SIG

ABN

BGS-MD Section

BGS

PD Nurse Specialists AHPs?

BritMODIS “Executive”

BritMODIS: A Group for PD Training, Education & Research

BritMODIS Executive

Research & trials

Clinical studies group

Portfolio delivery

Training, education & meetings

Fellowships

Evidence-based / guidelines

Regional representation mapping to LCRNs where possible