The Epilepsy Foundation has been engaging in research over the last 10 years with a primary focus around obtaining a better understanding of the experiences of people with epilepsy, their families and carers, and the impacts of living with epilepsy (e.g. psychological and social).
We recognise the importance of these research findings and their influence on programs/activities implemented by the Foundation for improvement of the lives of people who live with epilepsy, their families and carers. We value and follow the practice of knowledge translation and see it as an important way to inspire donors, decision makers, policy makers, and funding agencies to make the most beneficial, long-term choices for people living with epilepsy. Through these actions, we aim to ensure a more beneficial and meaningful future for people living with epilepsy.
We are currently in the process of developing our research plan for 2017-2020. This plan will identify the priorities that are important in conducting research in Australia to advance outcomes and solutions for people with epilepsy, their families and carers which promote inclusion and equality.
Learn more about our research achievements and projects:
Australian Epilepsy Research Register
Current and recently completed research
Current and recently completed research
Is medicinal cannabis effective for drug-resistant seizures in Dravet syndrome? – a plain language summary
Source: Devinsky, O et al. Trial of cannabidiol for drug-resistant seizures in the Dravet syndrome. New England Journal of Medicine. 2017; 376: 2011 – 20.
Does mindfulness help people with epilepsy? – a plain language summary
Source: Wood, K et al. Mindfulness-based interventions in epilepsy: a systematic review. BMC Neurology (2017) 17:52
What effect does epilepsy have on people in their later years? – a plain language summary
Source: Yennadiou, H and Wolverson, E. The experience of epilepsy in later life: A qualitative exploration of illness representations. Epilepsy & Behavior. 2017; 70: 87 – 93
What treatments are beneficial in the prevention of post-traumatic epilepsy? – a plain language summary
Source: Piccenna, L, Shears, G and O’Brien, T. Management of post-traumatic epilepsy: An evidence review over the last 5 years and future directions. Epilepsia Open. 2017.DOI: 10.1002/epi4.12049
Bellon, M, Walker, C, and Peterson, C. Seizure-related injuries and hospitalizations: Self-report data from the 2010 Australian Epilepsy Longitudinal Survey. Epilepsy & Behaviour. 2013; 26: 7 – 10. Read the article
Bellon, M, Walker, C, Peterson, C and Cookson, P. The “E” word: Epilepsy and perceptions of unfair treatment from the 2010 Australian Epilepsy Longitudinal Survey. Epilepsy & Behaviour. 2013; 27: 251 – 256. Read the article
Peterson, C, Walker, C and Shears, G. The social context of anxiety and depression: Exploring the role of anxiety and depression in the lives of Australian adults with epilepsy. Epilepsy & Behaviour. 2014; 29 – 33. Read the article
Bellon, M, Pfeiffer, W and Maurici, V. Choice and control: How involved are people with epilepsy and their families in the management of their epilepsy? Results from an Australian survey in the disability sector. Epilepsy & Behaviour. 2014; 37: 227 – 232. Read the article
Research and Policy Reports
The Epilepsy Foundation Research Unit (EFRU) values the practice of responsible, high quality, robust and transparent research to complement the organisation’s vision that no one should go it alone with their epilepsy and its overall strategy.
We support research that has an overall aim of improving the needs and the quality of life of people with epilepsy so that they feel safe and connected in the community. We support the process of co-design/production in the development and undertaking of research projects. It is important that the perspectives of people and their families with epilepsy are a key part of research and we feel we can facilitate this process in the most appropriate way.
We do this by translating epilepsy research findings (internally and externally produced) into our services, our practices, and also to inform or influence Government policy so that the people with epilepsy are supported and their needs are met.
We use the Australian Code for the Responsible Conduct of Research (for a downloadable copy see – https://www.nhmrc.gov.au/guidelines-publications/r39) across all research projects and research related activities at the Epilepsy Foundation and in conjunction with external partners and collaborators. We also recognise the guidelines in the National Statement on Ethical Conduct in Human Research. You can access the statement at – https://www.nhmrc.gov.au/guidelines-publications/e72
We are strongly committed to only engaging in research that is ethically approved through National Health and Medical Research Council (NHMRC) registered committees, or a university or institution based Human Research Ethics committee. This is also the approach we take when engaging in research projects with external partners.
The Epilepsy Foundation has a research committee who meet regularly every quarter of the year. The research committee was initially established to ensure that all research activities and projects within the organisation were conducted with appropriate rigour, with the best quality and ensuring the upmost privacy and confidentiality of people with epilepsy.
The committee also oversees approval for research within the organisation so that –
1. It meets the needs of people with epilepsy;
2. It is fit for purpose;
3. The intended benefits for people with epilepsy outweigh the risks;
4. People with epilepsy do not get overwhelmed with participating in research projects.
We are currently in the process of developing our Research and Evaluation Framework to formalise our research purposes, processes, programs and translation into practice.