Our network aimed to establish a network of leading European multidisciplinary aphasia investigators in stroke rehabilitation, social science, linguistics, medicine, neuropsychology and language research.
- Develop a formal international network of investigators and clinicians from a range of settings and specialist domains with an interest in aphasia rehabilitation research.
- Develop a sustainable web-based application to support the network functions.
- Facilitate members’ access to data, resources, consensus statements, expertise and promote knowledge transfer between researchers and settings.
- Foster the development of an international network of coordinated and collaborative research activities which will improve our understanding of the impact of aphasia (on the individual, on families), assessment, diagnosis, prognosis, rehabilitation, recovery and reintegration (functional, rehabilitation, occupational, societal and economic) of people with aphasia.
Each year 1.1 million people in Europe, Iceland, Norway and Switzerland experience their first stroke and an estimated 360,000 Europeans per annum experience a loss or impairment of language, known as aphasia. Aphasia research has faced methodological and infrastructural challenges. Typically it remains language, region and discipline specific limiting the efficiency, strength and broader relevance of any research. Our network sought to address these challenges.
The Collaboration of Aphasia Trialists (Action IS1208 2013-2017) succeeded in supporting the development of an international network of 179 researchers that worked to bridge different disciplinary, linguistic, geographic and research paradigm perspectives to discover a shared ambition to enhance the rehabilitation and recovery of people with aphasia after stroke. While our COST network included 26 countries, several of our projects extended that network further, collaborating with researchers from a further 10 countries (including Brazil, Canada, Chile, People’s Republic of China, Egypt, Iran, Japan, Poland, South Korea, Switzerland and USA).
We co-ordinated our research activities across 27 on-going collaborative research proposals (12 additional projects under review with funders or in preparation) reflecting our four research
orientated Working Groups’ focus on (1) Assessments and outcomes, (2) Predictors and prognosis, (3) Effective interventions and (4) Societal impact and reintegration. During the COST funding period network members secured an additional €1.1M in competitive external research funding to support their collaborative research activities.
We also demonstrated the synergistic development of multiple parallel projects - adapting an aphasia assessment tool into 14 languages, developing consensus on an ICF based definition of aphasia, sought multidisciplinary consistency in the use of the term ‘aphasia’, supported the development of a core outcome set, created an international database of secondary individual patient data from aphasia researchers which will inform highlight predictors of recovery and inform our prognoses, evaluated the quality of aphasia intervention reports in the literature, reviewed the evidence of the effectiveness of interventions, evaluated the effectiveness of new interventions and explored ways in which we can support people’s reintegration back into society with aphasia. We established the top ten aphasia research priorities as identified by people with aphasia, family members and therapists.
Our network communications, functions and members needs were well supported by our website. Our outputs have been published in 11 papers to date (with an additional six manuscripts in preparation). We delivered seven workshop events about our research and contributed to one consensus meeting. We presented our activities in 34 conference papers and additional posters. We hosted two conferences and three training schools. Our dissemination efforts sought to share our findings with people with aphasia and their families, health and social care professionals and third sector groups supporting people with aphasia. Through these efforts, we successfully met the objectives of our network.
Our work within the Collaboration of Aphasia Trialists has been supported for an additional three years by the Tavistock Trust for Aphasia (STROKE01.3). As a result of this investment, we aim to further develop and enhance our current portfolio of research activities.
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