The patient view

Gillian Kenny Associates is a medical market research company based in Gloucestershire. They are carrying out some research at the moment looking at potential new treatments for epilepsy. They would like to speak to people with epilepsy to get their views and opinions.

The research would involve a 60 minute face to face discussion with the patient at a studio in Birmingham on Tuesday 14 September 2010 and in London on Wednesday 15 September 2010 and. All interviews will be audio and video recorded for analysis purposes only.

They are looking for people who fit the following categories:

• Patients must have either Partial or Generalized seizures.
• They must have been having with these seizures for more than two years and less than 10 years.
• The patient must have had a seizure in the last six months.
• The patient must visit their neurologist at least once a year.
• The patient must be on at least two medications for a period longer than three months.

People interviewed will receive a payment of £45. In addition, Gillian Kenny Associates will give Epilepsy Action £25 for each patient recruited through the organisation.

If you are interested in helping with this research or would like more information please contact Emma Garside on 01594 515106 or alternatively email emmagarside@gilliankenny.com  Please remember to mention you hear about the research through Epilepsy Action.

Please contact Emma as soon as possible if you are interested in helping as there are only a limited number of people required.

Gillian Kenny Associates is a member of the Market Research Society and strictly adhere to their codes of conduct ensuring the anonymity of all participants. All information given is totally confidential. No details will be passed to any third party for reasons outside of this research project and nobody will be approached by any third party or receive any follow up calls.
 

Narratives of living with epilepsy in adulthood

Were you diagnosed with epilepsy as an adult?

Lisa Brosh is a trainee clinical psychologist at the University of Hertfordshire. Her research interest is in the stories of people who are diagnosed with epilepsy as adults. There has been little focus within clinical research upon the individual’s experience of living with epilepsy, and how those diagnosed in adulthood understand and adapt to this change to their expected life course.

This research aims to hear personal stories of individuals diagnosed in adulthood. It is an important original piece of research that will help health care professionals to better understand the experience of living with epilepsy, which will be useful in developing services and support for people with epilepsy.

If you  would like to know more about this research or how to take part please contact Lisa Brosh by email: lisabrosh@hotmail.com or post: Doctor of Clinical Psychology Training Course, University of Hertfordshire, Health Research Building, College Lane Campus, Hatfield, AL10 9AB.
 

Self reported quality of life in men with epilepsy 

The Epilepsy Service at the Western General Hospital in Edinburgh is carrying out a study looking at quality of life in men with epilepsy. The study is led by Dr Susan Duncan, a neurologist at the hospital.

They would like men with epilepsy between the ages of 18 and 50, living in the UK, to help by completing four questionnaires. These should take about 20 mins in total. The questionnaires cover a wide range of quality of life issues including sexuality. Therefore, some of the questions are of an intimate nature. All responses are anonymous. If you decide to take part it is important to answer all the questions.

• Download the questionnaire

You should complete the questionnaires and save the file to your computer, then send it as email attachments to susan.duncan4@nhs.net Alternatively, you may print off the questionnaires and return them by post to the address below.

The research team would be very grateful for your help.

If you would like any further information, or would prefer paper copies of the questionnaires, please contact Dr Duncan directly. You can email her at susan.duncan4@nhs.net or telephone on 0131 5371000. Her postal address is Dr Susan Duncan, Consultant Neurologist, Department of Clinical Neurosciences, Western General Hospital, Edinburgh, Scotland EH4 2XU

Factors influencing carers of adults with epilepsy and learning disabilities

Naomi Beinart is a medical nutritionist working with adults with epilepsy and learning disabilities. As part of her MSc at University College London she is looking at the experiences of carers of adults with epilepsy and learning disabilities in the UK.

This research project will be exploring the factors that influence the health and quality of life of carers. Naomi believes that this information will be useful in developing strategies to improve the coping skills and resources available to carers. The aim is to improve their lives and the care they deliver.

If you are a carer (either formal or informal) and would be interested in taking part in this study please contact Naomi directly naomibeinart@gmail.com or write to her at Flat 9, The Nook, 10 Brangwyn Crescent, London SW19 2UB
 

Children, young people, parents and clinical trials

http://www.youthhealthtalk.org/  is a website about young people’s real life experiences of health and lifestyle. It contains interviews with young people talking about their health conditions, including epilepsy.

They are currently developing a new section on the website on taking part in clinical trials. A clinical trial can be of any form or type including medicines and other types of treatment and care such as surgery, vaccination, neonatal care, different types of diet, physiotherapy, complementary therapies and so on. 

This section will include interviews with young people and parents who have been involved in a clinical trial. This could be by completing the trial, withdrawing or deciding not to take part.

• More details about the project

Alternatively, you can contact Lesley Powell, by phone, text or email. If you then decide you don’t want to take part - no problem.

• Tel: 01865 617768/289328
• Text only: 07729 305206
• Email: lesley.powell@dphpc.ox.ac.uk
   

Memory and visual perception

SallyAnn Wakeford is a PhD student at the University of Bath. As part of her research she is looking at areas around behaviour and thinking in people with epilepsy. SallyAnn would like to hear from people who would be interested in taking part in several tests for this research area. The overall aim of this part of the research is to investigate whether it is possible to produce a way to support memory enhancement.

This study will look at visual skills in people with epilepsy. It will involve some simple responses on a keyboard while watching a computer screen. Testing will take place at the University of Bath during August and September. Volunteers will be invited to join in with two short memory tasks and a simple shape finding task. Volunteers will be provided with a small gift (chocolates or gift voucher) and an opportunity to comment on and ask questions about the tests.

The above study has been given ethical approval by the University of Bath. You must be over 18 years to take part.

If you have any questions please contact SallyAnn on 01225 384349 or at srw22@bath.ac.uk  All enquiries will be handled confidentially.
 

Have you suffered an allergic reaction after starting treatment with carbamazepine, phenytoin or lamotrigine?

A research team led by Professor Munir Pirmohamed are carrying out s research study looking at adverse reactions to anti-epileptic drugs (AEDs). They are particularly interested in people, living in the UK, who have experienced a skin rash shortly after starting an AED and who have consequently had that drug withdrawn.

The aim of this study is to identify genetic factors that may explain why some people develop allergic reactions to AEDs. The results of this study will not be of direct benefit to you but may improve the treatment of epilepsy in the future.

If you are eligible, we will ask you to provide a blood sample (equivalent to two teaspoonfuls) or a saliva sample (equivalent to half of one teaspoonful). This will be done by a medical professional. You will also be asked for permission to access your medical records so that we can obtain information about your treatment and the side effects you experienced.

For more information and to discuss participation in this project, please contact Anita Hanson and Jane Evely, who are research nurses in Professor Pirmohamed's team. They can be contacted (Mon-Fri, 9am-5pm) on 0151 794 5539, by email at epilepsy.adr@liv.ac.uk or by writing to the address below:

The Wolfson Centre for Personalised Medicine
Department of Pharmacology
University of Liverpool
Block A: Waterhouse Buildings
1-5 Brownlow Street
Liverpool L69 3GL
 

Behaviour and thinking

This study is now closed.

SallyAnn Wakeford would like to thank everyone who took part in this study. This participation was greatly appreciated. The results have proved interesting and worthwhile, and opened up new areas of research.  This study could not have been done without volunteers who provided their time freely to give information and do these tests. The results will be available early next year, and will be available to all the volunteers who took part. If you did not take part in this study but would like to know the findings, please contact the researcher on srw22@bath.ac.uk

Investigation of visual loss in patients diagnosed with epilepsy who have never received the anti-epileptic drug Vigabatrin

Scientists have suggested that Vigabatrin (a drug used to treat epilepsy) is sometimes linked to specific vision problems. Researchers at City University in London are investigating whether patients who are diagnosed with epilepsy, who have never received Vigabatrin, also experience the same problem.

Part of the study involves carrying out simple eye tests on people with epilepsy, who have not been prescribed Vigabatrin. These are eye tests that are routinely carried out as part of an eye examination. The tests will be take place at the university’s optometry clinic in central London. People participating in the study will be asked to attend the clinic on two occasions. The first test will last 90 minutes and the second 60 minutes.

Expenses will be paid to participants. However, there are limited funds to cover expenses of people travelling from outside the Greater London area.

If you are interested in taking part in the study, or would like further details, then you should contact Dr Miriam Conway on 0207 949 8392 or email Miriam.Conway.1@city.ac.uk

AbilityNet 

AbilityNet is a national charity helping disabled adults and children use computers and the Internet by adapting and adjusting their technology.

As part of this work they ask disabled web users to test websites and give feedback on their experience of using a website. This feedback is then used to help improve the accessibility of the website.

The testing will take place in Central London. However, the tasks can also be carried out at home. AbilityNet pay an hourly fee plus travel expenses to their testing lab for all participants.

It’s a great chance to help remove some of the frustration people with disabilities face when using the web and earn some extra cash!

Potential recruits will need to be regular internet and email users.  AbilityNet can only recruit people who have some physical, sensory, cognitive or literacy difficulty that substantially impacts their computer use.

For further details please send an email to Helen Liptrot (helen.liptrot@abilitynet.org.uk) or call 0800 269545.

The voice of childhood epilepsy

Are you a parent or carer of a child with epilepsy? If so, would your child be interested in sharing their experience of living with epilepsy?

The National Centre for Young People with Epilepsy is looking for contributions from children to be included in their new booklet, ‘’The voice of childhood epilepsy’’. Your child can write their own piece or have the help of a parent or carers. You should email your child’s story to info@ncype.org.uk or post to:

The Information and Education Service
The NCYPE
St Piers Lane,
Lingfield
Surrey
RH7 6PW

Or, if you would like more information, please contact Gill Gallagher on 01342 831338 or email ggallagher@ncype.org.uk 

Providing feedback on self-ratings of quality of life

Researchers at the UK’s University of Bath are conducting a study exploring how understanding our own quality of life affects the way we think about our wellbeing.

They are looking for volunteers with epilepsy to take part, although they would also like to hear from healthy adults or those with other health conditions. Volunteers must be 18 or over and have access to the internet.

Although the study cannot promise to help anyone individually, it may give participants a better understanding of their own quality of life.

If you want to take part or would like further information, please contact Alison Llewellyn at a.m.llewellyn@bath.ac.uk

Do you have a family history of epilepsy?

If the answer is yes and you would be interested in helping find a genetic cause for familial epilepsy, then at the Wales Epilepsy Research Network would like to hear from you. The research is based in Wales, but families across the UK can take part.

The purpose of the study is to find new genes that cause epilepsy. It is hoped that the findings of the study will eventually benefit not only families with a history of epilepsy, but also individuals with epilepsy more generally.

To take part families must have four or more affected members, or have siblings who have epilepsy.

If you would like more information please contact Dr Rhys Thomas on 01792 295134, email Rhys.thomas@swansea.ac.uk or Carrie Hammond on 01792 602310, email c.l.hammond@swansea.ac.uk   

Disclaimer
While Epilepsy Action endeavours to take every precaution to ensure that such research projects are bone fide, the inclusion of such requests does not imply that Epilepsy Action endorses the research or recommends people with epilepsy should take part. Anyone who wishes to participate in such projects should satisfy themselves that this will not be prejudicial to their health or well-being. Epilepsy Action cannot be held legally responsible for any negative outcome.