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: b.grabsch@unimelb.edu.au

Dominique Cadilhac (Data Custodian)

Telephone: (03) 9035 7032

Email: cadilhac@unimelb.edu.au

AuSCR Contact Details