The epidemiology and natural
  history of rare progressive
  neurological disease


  Cath Sackley, Lily Yao, Melanie Calv...
Purpose

Healthcare improvement model based on other areas (eg. Stroke
  i.e. information/evidence based guidelines plus a...
Rare neurological diseases

 Huntington’s Disease
 Motor Neurone Disease (ALS)
 Multiple System Atrophy
 Post Poliomyeliti...
Plan of the Investigation

Work Package 1- Prioritise questions to be asked (service user
led)

Work Package 2 - Systemati...
Work Package 1

•      Service users to identify priorities with support
    from facilitators, clinicians & researchers

...
Work Package 2


    Systematic review of existing trials and literature
    (Bibliographic databases, RCT databases, grey...
Work Package 3

 Access GPRD and HES databases (6.7 million
 patients)
 Patient ID by Read Code/ pharmacological
 prescrip...
Work Package Y

 Postal survey to identify social care usage (eg. Referrals,
 assessments, packages of care, costs, QoL da...
Work Package 4

 Use data sets to estimate economic burden to
 society
 Develop disease progress costing models


Output
 ...
Work Package 5

 Dissemination
 Main Purpose: To inform NSF & influence service
 managers, commissioners and practitioners...
Summary of deliverables

Actively engage with service users throughout the
study
Update epidemiology of rare progressive n...
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The epidemiology and natural history of rare progressive ...

  1. 1. The epidemiology and natural history of rare progressive neurological disease Cath Sackley, Lily Yao, Melanie Calvert, Paramjit Gill, Hardev Pall & Nick Freemantle University of Birmingham
  2. 2. Purpose Healthcare improvement model based on other areas (eg. Stroke i.e. information/evidence based guidelines plus audit stroke strategy. AIMS Enable service users to identify their priorities for data collection. Describe epidemiology of rare progressive neurological conditions. Provide information to underpin the NSF LTNC and service commissioning. Address potential issues of diversity
  3. 3. Rare neurological diseases Huntington’s Disease Motor Neurone Disease (ALS) Multiple System Atrophy Post Poliomyelitis Syndrome Charcot Marie Tooth Disease (HMSN) Progressive Supranuclear Palsy Dominantly Inherited Ataxias
  4. 4. Plan of the Investigation Work Package 1- Prioritise questions to be asked (service user led) Work Package 2 - Systematic review of existing literature Work Package 3 - Data capture & analysis (GPRD & HES DBs) Work Package 4 - Health economic modelling (disease specific) Work Package 5 – Dissemination, led by service users Work Package Y – Postal survey (social care, BME representation)
  5. 5. Work Package 1 • Service users to identify priorities with support from facilitators, clinicians & researchers Output • 20 items to be collected/ disease group (eg. GP consultation, hospital visit) • Agreed by service users (delphi model)
  6. 6. Work Package 2 Systematic review of existing trials and literature (Bibliographic databases, RCT databases, grey literature, policy documents etc.). Output • Systematic review for each specific disease regarding factors such as: Incidence, prevalence, service patterns, natural history, resource use, functionality and QoL etc.
  7. 7. Work Package 3 Access GPRD and HES databases (6.7 million patients) Patient ID by Read Code/ pharmacological prescriptions Output Retrospective estimates of incidence, prevalence for each disease Details of disease progression and management
  8. 8. Work Package Y Postal survey to identify social care usage (eg. Referrals, assessments, packages of care, costs, QoL data) Social service data not included on GPRD or HES databases. Involve diverse groups including BME populations Output Social care use and costs Quality of Life data
  9. 9. Work Package 4 Use data sets to estimate economic burden to society Develop disease progress costing models Output Cost implications to NHS and society Economic evaluation frameworks
  10. 10. Work Package 5 Dissemination Main Purpose: To inform NSF & influence service managers, commissioners and practitioners Set future research agenda. Output Patient/carer/public focused material, guidance document for commissioners and service delivery, road map future research. Publication in high impact-factor scientific journal
  11. 11. Summary of deliverables Actively engage with service users throughout the study Update epidemiology of rare progressive neurological conditions, including BME groups. Provide information on access, resource use and costs to underpin the NSF LTNC and service commissioning in health and social care. Address issues of equality of access & diversity

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