Introduction: The number of people in Australia living with stroke is predicted to reach 1 million by 2050. While a growing body of stroke survivorship research is emerging, there remains great opportunity to grow this evidence base further and to ensure sustainable infrastructure to help build capacity. The Allen Study, supported through a generous philanthropic gift, is designed in direct response to these needs.
Methods: A longitudinal cohort study of post-stroke adults living in NSW. Participants complete a baseline self-report survey repeated annually over 8 years. Survey data will be linked to 7 national health/medical databases. The Allen Study is more than just a project, it follows a sub-study design whereby follow-up recruitment of baseline participants by external research teams (including lived-experience contributors) can be accommodated providing a convenient nested sampling frame to explore a vast range of post-stroke related issues using a range of designs/methods.
Results: The Allen Study has ethical approval and will be launched in 2024 with the aim of attracting 500+ participants. Based upon similar longitudinal cohort studies on other health topics there is good evidence to suggest this approach will help boost and sustain research attention. Past experience also suggests this approach helps significantly grow the evidence-base to inform effective support and care.
Conclusion: The Allen Study constitutes vital infrastructure to facilitate coordinated, collaborative research and grow vital research capacity. The study will also encourage researcher-practitioner-community collaborations wherever possible.
Relevance to clinical practice or patient experience: The Allen Study will help inform a vast range of stakeholders including those providing post-stroke clinical care and services. At the heart of the Allen Study approach is also a commitment to co-designing research with those with experience of living post-stroke.