Does Epilepsy Action have a position statement on genetics research and testing in epilepsy?
Yes. The following 11 principles were approved by Epilepsy Action’s Research Committee in October 2016:
- We recognise the potential of genetic research leading to precision medicine and potentially disease modifying therapies
- We support the allocation of public funds to genetic research
- We will support campaigns for a greater proportion of government research funding to be allocated to all epilepsy research including genetic research
- We support the development of genetic tests to identify genetic epilepsies. The validity and benefits of predictive tests should be established before tests enter clinical use
- We believe that patient confidentiality and consent is an absolute requirement of all providers of genetic testing and all genetic research projects
- We believe that discrimination on the basis of genetic status should be avoided in all policies and the provision of goods and services
- Assurance of quality of pre and post-test counselling and information is as important as quality of clinical tests
- Public and patient involvement is crucial in the development and deployment of the results of genetic research and testing
- We will work to raise awareness and understanding of genomics in the epilepsy community and be impartial in the debate about potential consequences
- We will encourage individuals to join or register with brain and tissue banks
- We will communicate the results of genetic research with our members and the wider community where appropriate through our usual channels including Epilepsy Today, Epilepsy Professional, Seizure and our website
If you would like more information about these principles, please contact Amanda Stoneman: firstname.lastname@example.org
What kind of research does Epilepsy Action fund?
We fund non-laboratory based research into epilepsy.
Does Epilepsy Action fund basic science research?
No. We focus our resources on promoting and undertaking non-laboratory research into social and clinical aspects of epilepsy.
Do you fund research that uses animals?
No. We only fund non-laboratory research.
If you do not fund research that uses animals, why do you support the principle of using animals in research?
We support the principle of using animals in research only when it is absolutely necessary to advance understanding of health and disease or to develop new treatments. This research should only take place where there are no other viable techniques available.
There is currently no single cure for epilepsy. Research helps to develop a better understanding of epilepsy, so that it can be diagnosed and treated more effectively. Although Epilepsy Action does not fund research that uses animals, we recognise that this kind of research has brought about significant benefits for people with epilepsy. For example, animal research has helped to increase understanding of seizures and develop new medicines and treatments for people with epilepsy.
Epilepsy Action is a member of the Association of Medical Research Charities (AMRC). What is the AMRC?
AMRC is a national membership organisation of leading medical and health research charities. Members are registered charities that fund research in the UK, as one of their principal activities. To be a member, you must meet certain membership criteria including publishing a research strategy and using peer review in awarding research funding. The AMRC is a collective voice for medical research charities in the UK.
What are Epilepsy Action’s research aims?
Our research aims are outlined in Epilepsy Action’s research strategy.
How does Epilepsy Action fund research?
In recent years, we have offered a range of research awards, from travel bursaries to large project grants, for research into specific areas of epilepsy. Some of these projects are still in progress.
We now fund research projects, which support Epilepsy Action’s strategic aims, campaigning and services. Details of there are in Epilepsy Action’s research strategy
Who decides which research Epilepsy Action funds?
Epilepsy Action’s Council of Management decides which research areas we fund. The Council, made up of our trustees, makes sure that all research fits with the charity’s goals.
We then invite researchers to apply for funding. Our research volunteers are asked to score the applications. The volunteers are people with epilepsy or a personal connection to it. This stage is called a lay review.
If an application for funding is over £25,000 a year, we also ask external experts to check it. They give us detailed written feedback to guide the final decision. This is called peer review.
The next stage involves our Scientific Awards Panel. This panel is made up of independent academic and clinical professionals, each with specialist knowledge. We also ask the panel to look at the volunteers’ and external experts’ feedback. The panel then provides a final score. This is also part of the peer review.
If an application is for less than £30,000, we award a grant based on the scores and recommendations of the Scientific Awards Panel.
If an application is for over £30,000, members of our Council of Management look at it. They consider the Scientific Awards Panel’s scores and recommendations. The Council then makes the final decision on who gets funding and the contract.
Epilepsy Action pays awards in instalments, as each part of the contract is finished.
Researchers have to give Epilepsy Action regular updates on their progress. These reports are checked by our Epilepsy Services Manager, the Research and Evaluation Officer and stakeholder project groups.
How much does Epilepsy Action spend on research?
We have limited resources to fund research. Most funds come from legacies and donations, so the amount available varies from year to year.
In what other ways does Epilepsy Action support researchers?
We can promote research studies and help with recruitment. We also advise on, and facilitate, active patient and public involvement in research (PPI). This is about enabling people affected by epilepsy to get involved in different stages of the research process, including the development of a study. In addition, we are involved in a number of proposed and ongoing studies, acting as partner, stakeholder, collaborator, supporter or advisor. We can also help by promoting research results.
Another way we support researchers is through Seizure – the European Journal of Epilepsy. This peer-reviewed journal, published for us by Elsevier and edited by Dr Marcus Reuber, features papers, case reports and focused reviews.
Find out more about our resources for researchers.
Does Epilepsy Action provide opportunities for people with epilepsy to get involved in research?
We are committed to ensuring that people with epilepsy can be actively involved in research. We have acknowledged expertise in patient and public involvement in research (PPI).We have a network of research volunteers who review our funding applications and contribute to consultations for external research teams. This helps to ensure that the research we fund and support is relevant and important to people living with epilepsy. We also recognise that many people with epilepsy are enthusiastic about taking part in surveys, studies and trials. We regularly advertise such opportunities on our website, in our publications and through social media.
What kinds of research does Epilepsy Action carry out?
We regularly carry out surveys to evaluate our work, inform the development of services and support our campaigning. We also work with NHS Trusts and other organisations to help with evaluation and development of epilepsy services.