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 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 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.
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 that meets regularly each quarter. The research committee was established to ensure that all research activities and projects within the organisation are conducted with appropriate rigour, with the best quality and ensuring the utmost privacy and confidentiality of people with epilepsy.
The committee also oversees approval for research within the organisation so that:
- It meets the needs of people with epilepsy
- It is fit for purpose
- The intended benefits for people with epilepsy outweigh the risks and
- 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.
Information about guidelines for governance of the Australian Epilepsy Research Fund can be found in the following documents: