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The Australian Stroke Clinical
Registry – 2012 update
Brenda Grabsch
on behalf of the
AuSCR and Stroke123 teams
June 15th 2012
A collaborative national effort to monitor, promote
and improve the quality of acute stroke care
www.auscr.com.au
Developed using national operating principles and technical
standards for clinical quality registries
AuSCR in a Nutshell
Run by a consortium formed in 2008: FNI, TGI, NSF, SSA
Online web-based patient registry with opt-out consent or
waiver for deaths in hospital
Data collection from participating hospital sites since 06/09
Core information collected prospectively for all eligible
stroke and transient ischaemic attack (TIA) patients
Locally accessible “live” reports for hospitals
Community-based, centralised patient follow-up at 3 months
Governance
Representatives of all major stroke stakeholders
Steering Committee: provides oversight, strategic
direction & governance to the Management Committee
Management Committee: oversees the day-to-day
operations
Specific task groups: an independent Research Task
Group provides advice & recommendations for separate
projects using AuSCR data
Data Custodianship: currently in transition from The
George Institute to the Florey Neuroscience Institutes
Steering Committee
Chair: Prof Sandy Middleton
Representatives of Stakeholder Groups
National Stroke Research Institute (FNI)
The George Institute for Global Health
National Stroke Foundation
Stroke Society of Australasia
State-based Stroke Clinical Networks, relevant professional
colleges & associations (drawn from Australian Stroke Coalition)
Australasian Rehabilitation Outcomes Centre
Consumers; Commercial partners; Government
Management Committee
Chair: Prof Craig Anderson
Members:
Prof Geoffrey Donnan
Assoc Prof Dominique Cadilhac
Assoc Prof Natasha Lannin
Prof Christopher Levi
Assoc Prof Steven Faux
Mr Chris Price
Prof Helen Dewey
Policies (available at www.auscr.com.au)
Publications
Data Security
Data Access
Complaints
Data Custodianship
Intellectual Property
Outlier Communication Plan
Quality Assurance and Data Management Processes
Consumer and Community Advisory Statement
AuSCR – Data Entry Site
AuSCR Minimum Data Set
Identifying information
Date of birth
Gender
Contact details
Hospital name
Clinical information for risk adjustment & measuring timeliness of care delivery
ICD10 code
Ethnic status
Date & time of stroke onset
Date & time arrive emergency department
Date of admission
Ability to walk on admission
First-ever (incident) event status
Clinical indicators
Use of tPA if an ischaemic stroke
Access to a stroke unit
Discharged on an antihypertensive
Care plan provided at discharge
Hospital outcomes data
Date of discharge or death
Discharge destination
Queensland sub-set
Aspirin given within 48 hrs (if
ischaemic stroke)
Anti-platelets prescribed on
discharge (if ischaemic stroke)
Time to first mobilisation
Dysphagia screen prior to patient
eating or drinking
Survivor status
Place of residence
Living alone status
Recurrent stroke event since discharge
Re-admission to hospital
Quality of life (EuroQoL5D)
For those under 18 we use age-appropriate PedsQoL
AuSCR Follow-up
Data export available for adhoc reporting & analyses of
hospital level data by clinicians
Access to local & national comparison data from 11
downloadable „live‟ reports
Ability to request 3 months patient outcome data
AuSCR Office provides a detailed annual report with
cleaned data that includes reporting adherence to
quality indicators & case-mix adjusted outcomes
Benefits of using AuSCR
Planned Progress indicated at
Registry SIG in Feb 2010
Roll out to as many sites as possible within available
resources
Apply for competitive grants
State government support for data linkage
Hospital support for data linkage/import
Seek more industry support
Set up annual reports
International collaborations
2 sites
5 sites
9 sites
5 sites
1 site
Site Rollout -
AuSCR Numbers
As of 27th May 2012
22 ethics approved hospitals
5,653 registered cases
4,326 completed follow-up
7.1% opt-out
Competitive Grants
Cadilhac - NHMRC/NHF Fellowship
Lannin - Balnaves Fellowship
NHMRC Partnership Grant - Stroke123 Project (4 yrs)
National Stroke Foundation, Queensland Health, Monash
University & in-kind contributions
Integrating AuSCR data through linkage with state-based
health data & National Stroke Foundation audit programs
Quality improvement interventions (Queensland)
State-wide application in Queensland will be a major outcome
Translation of findings into policy & practice
10 Chief Investigators
Dominique Cadilhac (CIA)
Craig Anderson
Geoff Donnan
Christopher Levi
Amanda Thrift
Sandy Middleton
Natasha Lannin
Steven Faux
Vijaya Sundararajan
Rohan Grimley
Plus 9 Associate Investigators
Stroke123 (continued)
Stroke123 (continued)
Administering Institution
Florey Neuroscience Institutes
Cash contribution
Monash University
National Stroke Foundation
Queensland Health
In-kind contribution
The George Institute
Stroke Society of Australasia
NSW Agency for Clinical Innovation
Victorian Stroke Clinical Network
Victorian Data Linkages, Dept of Health
Statewide Stroke Clinical Network, South Australia
WA Stroke Clinical Leads, Dept of Health
Primary hypothesis
Hospitals that are involved in an active quality improvement
program & have access to comprehensive, high quality &
integrated data that includes 90 day health outcomes are more
likely to change their clinical practice & demonstrate greater
improvement in adherence to clinical guideline
recommendations when compared to an historical control
period.
Sub-study to be undertaken in Queensland where AuSCR
will be used in up to 28 hospitals
Stroke123 (continued)
Primary outcome
The primary outcome is the composite score of total
number of interventions performed among eligible
patients divided by the total number of possible
interventions among eligible patients.
Stroke123 (continued)
State Government
Support for Data Linkage
Stroke123 grant – cash and in-kind support
Queensland Health
Victorian Data Linkages, Dept of Health
Statewide Stroke Clinical Network (South Australia)
WA Stroke Clinical Leads, Dept of Health
NSW Agency for Clinical Innovation - Statewide
Stroke Services Clinical Network
Hospital Support for Data
Linkage/Import
Stroke123 grant – cash and in-kind support
Queensland Health - additional data sub-set
Victorian Stroke Clinical Network (Dept of Health)
funding for IT support for AuSCR implementation
Several Victorian hospitals to be awarded funding to set-
up data importing to reduce manual data collection burden
Industry & other Support
Allergan has provided the majority of industry support –
less and less each year
Ipsen – small grant to explore linkage with rehabilitation
data
Two $20K grants from the Stroke Society of Australasia
In-kind from each partner organisation in Stroke123
Annual Reports
2010 Annual Report: available on-line
2011 Annual Report: in production
Annual Report - 2010
International Collaborations
Dr Atte Meretoja - Finnish Stroke Registry
Other discussions for between country outcome analyses
Kjell Asplund (Sweden)
Moria Kapral (Canada)
Application approved by Steering Committee: Feb 2012
New staff appointments
Handover sessions: (TGI) Sydney & (FNI) Melbourne
Transition processes
Patient follow-up
Ethics amendments
Hospitals
Administration
Web tool
Planned “official” handover date: July 1st 2012
Data Custodianship Transfer
Other Important Outputs
Trial of efficiency of telephone versus mail
follow-up protocols
AuSCR in Queensland
Other sub-sets of the data spine
Aim
To compare costs per completed questionnaire of telephone versus mailed follow-up
Methods
1:1 random allocation with sample size of 250/group
Resource costs - labour, supplies, postage, telephone calls
Results
Mail slower but…
Similar completion rates to telephone but…
Telephone costs are 1/3 greater (net difference average cost $4.64; 95% uncertainty interval -$6.14 to $17.44)
Efficiency of Telephone
versus Mail Follow-up
Lead Committee HREC (RBWH) approval: Feb 2011
4 sites operational/approved prior to Stroke123
New Queensland data variables confirmed
Data Dictionary for Queensland variables drafted
Qld sub-set in final stage of User Acceptance Testing
Hospitals prioritised for start-up
Further site specific applications commenced early 2012
More training for hospital staff to start in July 2012
Exploring centralised data importing options for
demographic variables
Progress with AuSCR
in Queensland
AuSCR Acute Data Spine
Paediatric data Follow-up data
Qld specific data Fabry stroke study (New) (New)
Data Spine and Sub-sets
AuSCR keeping in Touch
Website - www.auscr.com.au
Newsletter
AuSCR on the Road
Stroke Society of Australasia conferences
Melbourne - 2010
Adelaide - 2011
Sustainable funding models for national stroke data
collection and quality improvement still needed
Australian Stroke Coalition endorsement of a national data
and quality framework
State-level support to engage/resource poor or low activity
sites e.g. South Australia, Western Australia
Federal recognition/support for national registries (not
usually funded by NHMRC etc) & current initiatives being led by
the Australian Commission for Safety & Quality in Health Care
Other funding sources e.g. Pharma, philanthropy
Other Opportunities
Bed down all processes as part of custodianship transition
Linkage with National Death Index to find loss to
follow-up registrants & confirm dates of death
Improved hospital engagement with systematic & efficient
methods of data collection
Enhanced research infrastructure e.g. follow-up of
treatment/health outcomes; analyses of larger, representative
data sets; additional data sub-sets
Optimal patient, clinical & academic outcomes with
universal application
The Future………
AuSCR Office Teams The George Institute
Craig Anderson (Data Custodian until mid-2012)
Joyce Lim (Registry Co-ordinator/Data Manager)
Sabrina Small (Administrative Assistant)
Tiffany Schneider (Administrative Assistant)
Jun Hata (Data Analyst)
Florey Neuroscience Institutes
Dominique Cadilhac (Data Custodian from mid-2012)
Brenda Grabsch (Registry Co-ordinator)
Francis Kung (Data Manager)
Emma Tod (Administrative Assistant)
Karen Moss (Research Assistant)
Steven Street (Queensland Project Officer)
Monique Kilkenny (Data linkage projects with Monash University)
AuSCR/Stroke123 Staff
Francis Kung, Emma Tod, Karen Moss Steve Street
Joyce Lim, Steve Street Brenda Grabsch, Joyce Lim
AuSCR/Stroke 123 Staff
Monique Kilkenny
Dominique Cadilhac
AuSCR Acknowledgments
Consortium Partners
Funding support
Unrestricted educational grants
www.auscr.com.au
Brenda Grabsch (Registry Co-ordinator)
Telephone: (03) 9035 7264
Email: [email protected]
Dominique Cadilhac (Data Custodian)
Telephone: (03) 9035 7032
Email: [email protected]
AuSCR Contact Details