The Allen Study has been initially resourced through a generous gift by the Nancy and Vic Allen Stroke Prevention Fund – a fund created in dedication to both Nancy and Vic Allen and their respective experiences and journeys in stroke survivorship and post-stroke caring. In 1987 Nancy suffered her first stroke and five years and four strokes later Nancy was left severely disabled. Nancy’s husband, Vic, cared for her throughout the nine years from her first stroke to her passing in 1996. Vic’s experience drove him to advocate passionately and tirelessly for stroke prevention and stroke care across Australia. The Allen Study has been founded and designed in dedication to Vic’s mission and to the memory of both Nancy and Vic Allen.
The Allen Study is the first research study dedicated to investigating the health and wellbeing of those living post-stroke over a long period of time. The focus is upon deepening our understanding of post-stroke experiences and circumstances to help inform and improve support and care for those living post-stroke as well as advance secondary stroke prevention.
Every year, around 56,000 Australians suffer a stroke and an increasing number survive their stroke. There are estimated to be nearly half a million stroke survivors alive in Australia today. Fortunately, recent years have helped us further understand the risk factors that can contribute to a stroke event, the importance of a speedy response to the signs of stroke and how to better treat and care for those who have experienced a stroke in the immediate term (acute care) and in the mid-term focused upon a period of rehabilitation. However, we know much less about a whole range of health and related issues faced by those living longer-term following a stroke. It is important to address this gap in order to help maintain enhance suitable care for stroke survivors, to optimise as much as possible their experience and quality of life moving forward, and to strengthen secondary stroke prevention where possible.
The Allen Study provides a unique opportunity to learn from the experiences and perspectives of a large number of people living post-stroke. The Allen Study affords both in-depth exploration and investigation over an extended period of time. Such study features bring two prime benefits. They enable a better appreciation and understanding of the different needs and challenges faced by those who have had a stroke (at specific time points and over time) and an opportunity to identify how these needs and challenges may be best addressed in partnership with carers, relevant health professionals and policymakers, and wider community.
The Allen Study is an initiative developed by a group of health researchers across a number of Schools at the Faculty of Health, University of Technology Sydney (UTS). The core team of the Allen Study is made up on Distinguished Professor Jon Adams (School of Public Health), Professor David Sibbritt (School of Public Health), Professor Jane Maguire (School of Nursing and Midwifery) and Dr Wenbo Peng (School of Public Health). This core team, led by Professor Jon Adams, is responsible for undertaking initial recruitment and baseline data collection. Further research over time which will draw upon the Allen Study infrastructure which will become open to a wider pool of researchers (in partnership with stroke survivors, carers and family members, health practitioners and policymakers) in the spirit of cooperation and collaboration.
The Allen Study is also importantly initiating an Advisory Committee in the first half of 2024. This will include a number of lived-experience contributors as well as representation across a number of academic disciplines and the non-academic sector. This Committee will provide important input and perspective on a range of ongoing planning and operational issues as well as co-design for future sub-studies nested within the Allen Study beyond baseline data collection.
If you live in NSW, have experienced a stroke and you are interested in contributing to the Allen Study Advisory Committee please see the Resources page on this website for further details.
