Take part in research projects

Children, young people, parents and clinical trials

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 April. 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.
 

Are you a carer or parent of someone with tuberous sclerosis?

Gillian Kenny Associates are a medical market research company based in Gloucestershire, UK. They are currently conducting a market research study on tuberous sclerosis complex (TSC) and would like to speak to patients and caregivers. The research involves a 60 minute telephone discussion. All interviews will be audio recorded for analysis purposes only.

They are looking for carers or parents of patients in one the following groups:

1. Adult patients with angiomyolipomas (AML)
2. Children under 18 years of age, with subependymal giant cell astrocytomas (SEGA)

The purpose of the research is to better understand the experiences of parents, carers and patients and to ultimately improve healthcare and educational support for TSC patients and families. There will be no attempt to sell anything. The discussion will be led by an independent interviewer and will be totally confidential.

As a ‘thank you’ for your time and participation you will receive £40.00.

If you live in the UK and would be interested in taking part, or would like further information, please contact Julie Sheen on 01594 515115 or email juliesheen@gilliankenny.com
 

Quality of life and acceptance of diagnosis: a comparison between patients with epilepsy and non-epileptic seizures.

Alicia Smith is an undergraduate student at the University of Plymouth studying for a BSc in psychology. As part of her dissertation project she is looking at the relationship between acceptance and quality of life in people who experience seizures. The seizures may be epileptic or non-epileptic.

Alicia is looking for adults with epilepsy and/or non-epileptic attack disorder to take part in this study. You will be asked to complete an on-line survey. This takes 20 minutes to complete.

If you have any queries, you can email alicia.a.smith@students.plymouth.ac.uk or contact her on 07897 898913

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
 

In their own words: focussing on women with epilepsy who have young children

Sarah Harney-Levine, a postgraduate student at Teesside University, is looking for women to help with her research into mothers and epilepsy in the UK.

The research aims to gather information from women with epilepsy who have children under five. This is to gain insights into their experiences of how their epilepsy affected or was affected by them having children. Participants will be sent a blank paper diary to complete daily over eight weeks. This will include questions about their experiences of pregnancy, childbirth and motherhood. It will also give them a chance to write about their current experiences in their own words.  Participants can also take part in a telephone interview about their experience of keeping a diary. This will provide the opportunity to talk about anything mentioned in the diary in more depth.

If you would like to find out more about taking part in Sarah’s research then please contact her on 07947 590998 or email e5079007@live.tees.ac.uk 

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.

Talking about medicines

The University of Nottingham are carrying out a study looking at ways in which children can be encouraged to take their medication properly. The study is being led by Professor Rachel Elliott, the Lord Trent Professor of Medicine and Health. Rachel tells us that taking medicines correctly is worse in children, especially adolescents, than in adults. She hopes that the research will find out why this is the case and identify ways to overcome the problem. Rachel would like to hear from parents of children with epilepsy who might be interested in being involved with the research.

The university have an information sheet if you would like to find out more. Alternatively, please contact Natasher Lafond on 0115 9515125 or email Natasher.Lafond@nottingham.ac.uk or Jacky Williams on 0115 9515105, E mail: jacky.williams@nottingham.ac.uk  

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 

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.