For Researchers

Context

The journey of those living post-stroke and their families and carers can be long as well as far from easy and straight forward. Living post-stroke can present many challenges around secondary stroke prevention, care access, information-seeking, and decision-making as well as maintaining and optimising the quality of life of survivors, their families and carers.

The Allen Study has been designed to directly advance and strengthen the research evidence-base and research capacity building around the health, health care and health outcomes of those living post-stroke in Australia.

The Allen Study design

Initially designed and led by a group of researchers across the Faculty of Health, University of Technology Sydney (UTS), the Allen Study is the first ever research study worldwide dedicated to investigating and understanding the health, health care and health outcomes of those living post-stroke over an extensive time period.

The Allen Study is a 10-year prospective longitudinal Cohort Study examining a wide range of issues in post-stroke survivorship and secondary stroke prevention. The study will recruit adults who have had a stroke and are living in NSW (with oversample for rural/remote). Recruitment will be via the Stroke Foundation, the Stroke Recovery Association NSW and through general (social) media promotion/invitation.

An online baseline survey will cover a range of areas including: key demographics; health insurance status; height & weight & BMI; smoking and alcohol consumption; physical activity; health-related QoL; psychological status; hardiness status; optimistic/pessimistic feeling; social support level; sleep status; fatigue; comorbidities and their length of time; falls; stroke duration; number of stroke(s); disability degree; conventional practitioner consultations; prescription medications; complementary medicine practitioner consultations; complementary health products/practices; information resources.

Linked Data

The Allen Study survey will also be linked (and updated every 3 years), via the Centre for Health Records Linkage (CHeReL) and Services Australia, to a number of routinely collected administrative health datasets:

  • The NSW Admitted Patient Data Collection (ADPC)
  • NSW Emergency Department Data Collection (EDDC)
  • NSW Registry of Births, Deaths and Marriages (RBDM)
  • Cause of Death Unit Record File (COD-URF)
  • NSW Mental Health Ambulatory Data Collection (MH-AMB)
  • Medicare Benefits Scheme (MBS)
  • Pharmaceutical Benefits Scheme (PBS)

Later Sub-Studies

A core focus of the Allen Study is providing significant research infrastructure to help grow both the evidence-base and the research capacity around post-stroke research. The Allen Study is more than just a project – it will provide a range of opportunities to coordinate and collaborate on efforts to explore key research questions and address key real-life challenges related to the experience of those living post-stroke and the efforts of those providing them with support and care.

Our vision is to facilitate opportunities for nested PhD students as well as academics/researchers and other non-academic partners through nested recruitment and sub-study design. Beyond an initial baseline and repeated data collection, the Allen Study will also facilitate a range of nested sub-study projects which will draw upon a vast range of cross-disciplinary and cross-sectoral expertise and perspectives. Such an approach will help address issues of pertinence to those experiencing life post-stroke as well as their immediate families, carers/caregivers, communities, health providers, health managers and health policymakers.

The onus will always be upon reflecting the experiences and serving the needs of those living post-stroke through the use of sensitive, inclusive design with key input from those with lived experience of stroke survivorship.

Within the first 12 months of completing baseline recruitment, an Expression of Interest (EOI) process will become available (via this website) whereby external researchers and PhD students (individuals and/or teams from across Australia and internationally) can submit proposals to the Allen Study Data Access Committee to recruit via the Allen Study cohort and conduct a nested sub-study. A key requirement of these sub-study designs will be to partner and collaborate with lived-experience contributors. More information and application documents relating to the EOI process will follow and be posted here in due course.Assessment of sub-study applications will also take into account the need to ensure Allen Study participants are not fatigued by research demands and all participants invited for subsequent sub-study recruitment will have a full right to refuse participation on a sub-study by sub-study basis.Meanwhile, if you have a question or would like to find out more about the Allen Study and sub-study opportunities, please do not hesitate to contact Distinguished Professor Jon Adams (jon.adams@uts.edu.au).