Improving life after stroke with tailored support: Innovation in use of national registry data

  • Cadilhac, Dominique (Primary Chief Investigator (PCI))
  • Middleton, Sandy (Chief Investigator (CI))
  • Kilkenny, Monique (Chief Investigator (CI))
  • Kleinig, Timothy John (Chief Investigator (CI))
  • Grimley, Rohan Scott (Chief Investigator (CI))
  • Kim, Joosup (Chief Investigator (CI))
  • Lannin, Natasha (Associate Investigator (AI))
  • Murphy, Lisa (Associate Investigator (AI))
  • Breen, Sibilah J. (Associate Investigator (AI))
  • Cranefield, Jennifer (Associate Investigator (AI))
  • Thijs, Vincent (Associate Investigator (AI))
  • Jaques, Katherine (Associate Investigator (AI))
  • Kelly, Louise (Associate Investigator (AI))
  • Bernhardt, Julie (Associate Investigator (AI))

Project: Research

Project Details

Project Description

Our observational research using data from the Australian Stroke Clinical Registry over 10 years has illuminated important health care gaps. These gaps include the association between health-related quality-of-life (HR-QoL) following stroke and self-reported long-term unmet needs, and the factors associated with unplanned presentations/admissions to hospital. While the registry data are important to describe the problems that patients face after stroke, there are also important opportunities to use these data to target and better support people who are most vulnerable after stroke. Currently, 62 hospitals participate in the registry and each year over 10,000 survivors complete a health outcome survey. The purpose of this Incubator project is to co-design with clinicians, survivors of stroke and health administrators a
nurse-led, outpatient-based service to review and manage people we identify as vulnerable based on registry data. The service will be tested for feasibility (primary outcome) and potential effectiveness in a pilot randomised control trial of 100 survivors of stroke who meet the eligibility criteria and are randomised to the Stroke Follow-up Service or usual care. Secondary outcomes collected within 90-days of randomisation by blinded assessors include: unplanned presentations/admission to hospital, the proportion of participants with poor HR-QoL, and service utilisation including allied health, medical and specialist visits. A process and economic evaluation are included to assess whether activities have been implemented as intended, enable reproducibility/refinements and to understand the cost implications of the intervention. We lack evidence of programs that optimise use of patient-reported outcomes data from a clinical registry to better enable hospital-based clinicians to tailor their follow-up services and improve liaison with primary care providers. Our new approach will transform care after stroke and drive innovation in registry science.
Effective start/end date1/06/2131/05/23


  • Department of Health and Aged Care (Australia): A$505,704.36


  • stroke outcome
  • quality of life
  • register
  • prospective cohort study
  • disease management