Current opportunities
Why the Folate Controversy Persists: Mapping the biosocial complexities of folate: the relationship between folic acid and anti-seizure medicines
UK only
Research in nutrition has shown the importance of vitamins to health, including the B-vitamin folate. Folate has been known for decades to help prevent birth defects, which is why women who are trying to conceive and woman who are pregnant are advised to take a daily supplement of 400mg of folic acid – the synthetic form of folate. It is also why over 60 countries worldwide have been adding folic acid to foods such as cereals and grains. Concerns, however, have and continue to be raised about the possible negative health effects of high doses of folic acid. Scientific explanations of folate are also increasingly debated on social media and online forums.
To be involved, contact Mette Kragh-Furbo via m.k.furbo@liverpool.ac.uk.
Expiry date: 30 June 2024
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The purpose of the study is to gain a fuller understanding of why the b-vitamin folate continues to create debate. The aim is not to generate evidence for or against folate, but to generate new knowledge about the tensions and values at stake in the debate on folate. The long-term ambition is to create positive changes in understandings of life with chronic illness and disease that will influence scientific research, policy and priorities.
What will I be asked to do if I take part?
You will be asked to participate in an interview about folate. The interview will last approx. 45-90 minutes and take place at a time and location of mutual convenience. The interview may involve a discussion of sensitive topics. You do not have to answer any questions that you do not want to. If you want the interview stopped, this is not a problem. With your consent, the interview will be audio recorded and transcribed. If you do not wish for the interview to be recorded, detailed notes will be taken instead to provide a record of the conversation. You are welcome to have a copy of your audio file once the interview has been transcribed or notes typed up. You will also be invited to review your transcript and asked if you wish for sections of the interview to be excluded.
Why have I been chosen?
You have been approached because you have been identified as a suitable participant for this study for one of the following reasons:
a scientist/expert with a research interest in b-vitamins; or
a complementary and alternative medicine practitioner or similar with an interest in health and vitamins; or
a policy stakeholder, for example, a patient organisation representative, business or industry association, MP or scientific advisor with an interest in health and vitamins; or
a member of the public with a special interest in folate/folic acid.
About 50 participants will be recruited for the study.
Do I have to take part?
No. It’s completely up to you to decide whether or not you take part. If you do decide to take part, you will be given a copy of this information sheet for your records. You will be asked to complete a participant consent form to show that you understand what taking part involves.
How will my data be used?
The University processes personal data as part of its research and teaching activities in accordance with the lawful basis of ‘public task’, and in accordance with the University’s purpose of “advancing education, learning and research for the public benefit”.
Under UK data protection legislation, the University acts as the Data Controller for personal data collected as part of the University’s research. The Principal Investigator acts as the Data Processor for this study, and any queries relating to the handling of your personal data can be sent to Dr. Mette Kragh-Furbo, email: m.k.furbo@liverpool.ac.uk.
Further information on how your data will be used can be found in the table below.
How will my data be collected?
With your consent, the interview will be audio recorded and transcribed. If you do not wish for the interview to be recorded, detailed notes will be taken instead to provide a record of the conversation.
We will also collect personal data including your name, contact details, and location data to be able to arrange and conduct the interview. Your job role will also be collected to be able to group participants into professional categories.
How will my data be stored?
The University will put in place appropriate technical and organisational measures to protect your data. For the purposes of this project, we will store your data using the University’s centralised and secure data storage facility for electronic data, Active DataStore (ADS).
How long will my data be stored for?
Your personal data will be stored for the during of the research project.
Interview transcripts will be kept for a minimum of 10 years upon completion of the project, in line with the University’s Research Data Management Policy.
What measures are in place to protect the security and confidentiality of my data?
Your data will be treated confidentially and shared on a need-to-know basis only. Transcripts will be anonymised and details that can be used to identify you will be removed from them such as names of people and places and instead marked with a code/pseudonym.
Will my data be anonymised?
Yes. We will use pseudonyms instead of real names or any details that could identify you. Anonymised direct quotations may be used in reports, presentations or publications from the study. Your name will not be attached to them.
How will my data be used?
Your personal data will be used to arrange and conduct the interview. Your job role will also be collected to be able to group participants into professional categories.
Interview transcripts will form part of a dataset that will be analysed by the research team.
Who will have access to my data?
Data will be retained and accessible only to the project team at the University of Liverpool for the duration of project.
Will my data be archived for use in other research projects in the future?
Shortly after the project’s completion, the anonymised transcript along with a copy of your signed consent form will be transferred to the UK Data Service where it will be kept indefinite. This is in line with the Research Council’s requirements that encourage the accessibility of research data and the ability of other researchers to review or re-analyse data from publicly funded research.
How will my data be destroyed?
Your personal data will be deleted from University servers upon completion of the research project. Hard copies of any documentation such as consent forms will be shredded upon completion of the project.
Are there any risks in taking part?
Risks of participating in this study are considered low. However, if you have any concerns or experience any distress following participation, you are encouraged to inform the researcher and/or contact the other people specified at the end of this sheet.
What will happen to the results of the study?
Results from the study will be shared with participants as research insights as well as more widely using social media. Results will also be submitted for publication in academic journals.
What will happen if I want to stop taking part?
If you no longer wish to take part, you can withdraw from the study at any time, without explanation. Results up to the period of withdrawal may be used, if you are happy for this to be done. Otherwise you may request that the results are destroyed and no further use is made of them. If results are anonymised, however, they may only be withdrawn prior to anonymisation. The time frame for withdrawal of your data/results, prior to anonymisation, is 1 month.
If you would like to withdraw from the study, you can contact the Principal Investigator Dr. Mette Kragh-Furbo (m.k.furbo@liverpool.ac.uk).
What if I am unhappy or if there is a problem?
If you are unhappy, or if there is a problem, please feel free to let us know by contacting Dr. Mette Kragh-Furbo (m.k.furbo@liverpool.ac.uk) and we will try to help. If you remain unhappy or have a complaint which you feel you cannot come to us with, then you should contact the Research Ethics and Integrity Office at ethics@liv.ac.uk. When contacting the Research Ethics and Integrity Office, please provide details of the name or description of the study (so that it can be identified), the researcher(s) involved, and the details of the complaint you wish to make.
The University strives to maintain the highest standards of rigour in the processing of your data. However, if you have any concerns about the way in which the University processes your personal data, it is important that you are aware of your right to lodge a complaint with the Information Commissioner's Office by calling 0303 123 1113.
Who has reviewed the study?
This study has received approval from the University of Liverpool’s Central University Research Ethics Committee. Reference: 13318. Approval date: 9/11/2023
Who is funding the study?
The study is funded by the Economic and Social Research Council. Project reference: ES/W010607/1.
To be involved, contact Dr, Mette Kragh-Furbo via m.k.furbo@liverpool.ac.uk
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Unfortunately, involvement in this study is not paid. The researcher is very happy to share the project findings with participants and your community, however.
Internalised stigma in people with seizure conditions
UK only
We are researching internalised stigma in people who experience functional seizures, compared to people with epilepsy. Internalised stigma is a term that refers to negative thoughts and feelings, such as shame, that people have about their condition. Research has found that some healthcare professionals have been found to have stigmatising views of functional seizures. We are interested in the similarities and differences in people with functional seizures and those with epilepsy in relation to internalised stigma. We are also interested in the impact that this might have.
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We are looking for people to take part who are:
- 18 years or over
- Live in the UK
- Have a diagnosis of either:
Psychogenic Non-Epileptic Seizures (PNES) /Non-Epileptic Seizure Disorder (NEAD)/ Functional Neurological Disorder and experience seizures (FND)
- Epilepsy
- Both a and b
- Have had this diagnosis for 3 months or more
The Brain development in Early Epilepsy (BEE) Study
UK only
The Brain development in Early Epilepsy (BEE) Study aims to track the development of babies with epilepsy, in order to understand features that might predict later outcomes, such as autism.
We aim to recruit a total of 80 babies with suspected or confirmed focal seizures and/or infantile spasms aged between 1 month and 10 months old. Babies with a possible diagnosis will be included until the diagnosis is confirmed or not.
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Unfortunately, you won't be able to take part if your baby has one of the following:
Significant uncorrected visual or hearing problems
Seizures provoked by acute conditions, such as fever, infections, trauma, electrolyte disturbances, transient metabolic/endocrine disorders
Click here to view our 'Parent Overview Information Sheet' to learn more details about the study.
Click here to contact the team if you have any questions and/or would like to express an interest in the study.
Exploring care for children and their families living with developmental and epileptic encephalopathies and genetic epilepsies
Australia only
We are keen to learn about day-to-day life and interactions with the health system for families living with developmental and epileptic encephalopathies (DEE) and genetic epilepsies. Please share with your communities and families.
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We’re working with The Royal Children's Hospital, Melbourne, Epilepsy Foundation of Australia, Murdoch Children's Research Institute (MCRI), and Australian Genomics to understand caring for a child with complex needs.
Here’s the link: redcap.mcri.edu.au/surveys
This survey consists of 5 questionnaires (plus one optional questionnaire at the end). We estimate these surveys will take a total of 50 minutes.
Relationship experiences following epilepsy surgery
UK only
Have you had epilepsy surgery? Did you have a partner before and at the time of surgery? How has the relationship been/developed since? We are interested to know about your experiences of romantic relationships and recovering from epilepsy surgery.
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What is the study about?
To understand how romantic relationships can be affected by epilepsy surgeries
To add to the body of research around what may be helpful to aid relationship adjustments after epilepsy surgery
To help build an understanding of required adjustments to epilepsy surgery services
Eligibility criteria
You had a temporal lobectomy/resection 2-5 years ago and became seizure-free after surgery
You were living with a partner before and at the time of surgery
You are 18+ years of age and live in the UK
To be involved, contact Zoe Poysden on 07929 784 478 or email s2137956@ed.ac.uk
Take part in our Transformational Project: Genseize!
UK only
Why have we chosen Genseize?
Epilepsy is a common neurological disorder affecting 0.5-1% of the population
Over 600 epilepsy diagnoses are made every week
A large proportion of epilepsies are genetic
Finding out the genetic cause can help guide treatment
What are our aims with Genseize?
To offer the most up-to-date genetic testing (Whole Genome Sequencing) to all patients with primary epilepsy
To provide equity of access to genetic testing reaching out to underserved groups
To provide a personalised approach to epilepsy management
To provide more accurate genetic counseling regarding reproductive risks and testing options during pregnancy
To study the natural history of genetic forms of epilepsy to enable better medical advice
To help people be ready for trials of potential new treatment approaches
To take part, please contact your GP!*
Check out our website for more information: southeastgenomics.nhs.uk
*For people from South London, Kent, Surrey, and Sussex in the UK
Expired
Improving the care provided in epilepsy clinics
UK only
Do you have epilepsy or regularly support someone with epilepsy?
We are trying to improve the way we monitor the effectiveness of epilepsy treatments
To do this, we need to make sure we ask about the most important ways epilepsy affects daily life
We need help from people with epilepsy and their carers, to tell us which aspects of epilepsy we should ask about in our clinics
For example, as well as asking about seizures and medications, should we ask about sleep, general health, mental well-being, relationships, or other things too?
You could help us by sharing your ideas in an online discussion group
All participants will receive a £20 Love2shop voucher for their time
If you would like further information or to take part, please contact Alice Winsor via alice.winsor@kcl.ac.uk
ALL RESPONSES GIVEN AS PART OF THIS SURVEY ARE CONFIDENTIAL
Closing date: TBC
Alice Winsor, Researcher
SUDEP Action & University of Oxford - Understanding the impact of COVID-19 on people with epilepsy - Global
This questionnaire is for healthcare workers, people with epilepsy, and carers of people with epilepsy.
Questionnaire available in multiple languages.
The COVID-19 pandemic is impacting us all and it can be challenging for people with health conditions like epilepsy. This project aims to better understand the impact of COVID-19 on people with epilepsy.
Links:
Examining the role of shame in seizure disorders
UK only
This study focuses on “Examining the role of shame in seizure disorders”. It’s known that shame is a significant contributor to various mental health difficulties and that people with seizures are often stigmatised; which can lead to increased levels of shame. Thus, we are curious as to how people with seizures cope with shame and how this may impact their mental health and seizure frequency and severity.
Here’s the link: https://shef.qualtrics.com/jfe/form/SV_3CRhX6UKa3WU9x4
National Confidential Enquiry into Patient Outcome and Death (NCEPOD) in Epilepsy
UK only
Are you a person with epilepsy? Are you over 18 years of age? Have you been presented to the hospital over the past year, following a seizure? This study could be for you!
We are reviewing the care of people who have been diagnosed with epilepsy and have presented to the hospital following an epileptic seizure. The aim of the study will be to produce a report for doctors and other professionals on how to improve the care that they deliver and provide guidance for people with epilepsy and their families on what care they should expect to receive.
In the survey below, we want to know about what happened during your most recent visit to the hospital following a seizure and how you felt about the care you received - whether you were admitted to the hospital or discharged straight from the Emergency Department/Accident and Emergency Department (A&E).
If you need this survey in Welsh, braille, or in an easy read format please contact us at epilepsy@ncepod.org.uk. Carers can also indicate that they are completing the survey on behalf of someone else if needed.
Here’s the link: https://ncepod.qualtrics.com/jfe/form/SV_dbgrL0twTxZ09mu
ALL RESPONSES GIVEN AS PART OF THIS SURVEY ARE CONFIDENTIAL
Closing date: TBC
Women with Epilepsy - Having Children (or not!) - UK
Are you a woman with epilepsy? This study could be for you!
We are a team of researchers at The Walton Centre NHS Foundation Trust and the University of Liverpool developing a preconception care pathway for women with epilepsy. This study will be used to:
• Identify essential support (interventions).
• Develop a pathway of stages for stepping in to support women, and.
• Develop a patient-reported outcome, to measure impact in service and in future research.
What will it involve?
We are inviting you to take part in the first stage of a study to develop a care pathway for women with epilepsy. If you agree to take part, you will be invited to an interview or a focus group discussion about your experiences.
• The interview will take place on the telephone or as a virtual face-to-face meeting by video call;
• Focus groups will be held online, and as a virtual group meeting, or by video call.
Eligibility
• Women with epilepsy aged 16-50 years - on or off treatment, with or without the experience of pregnancy, any seizure type or frequency, including seizure-free;
• Partner, spouse, parent, relative, carer, or friends of a woman with epilepsy.
Where to go for more information?
For more information or to participate, please call the research team 0151 556 3721; email the research team preconceptionstudy@thewaltoncentre.nhs.uk, or check out our site: epilepsypreconceptionstudy
Closing date: TBC
Featured in Epilepsy Action’s publication: Epilepsy Today
Epilepsy Surgery: A Patient & Carer Perspective
Any country
Are you a person with epilepsy or parent/carer of someone with epilepsy?
We would like your help in designing research studies to help improve treatments for epilepsy. We would therefore appreciate it if you could complete our survey by clicking on the link below. It should only take about 10-15 minutes and can be completed on a smartphone, tablet, or computer.
Here’s the link: https://forms.gle/wChikWLbr9S9XmLEA
We really appreciate your input into making our research more meaningful!
Using a ‘digital doctor’ in diagnoses!
UK only
Why might a person be losing consciousness?
It’s often difficult to distinguish between epileptic seizures, fainting, and dissociative seizures (each known as a form of “transient loss of consciousness (TLOC)). This study is to find out if it’s possible to use a ‘digital doctor’ (!) to find out why a person has experienced a TLOC; so that people can more swiftly and more effectively be referred to the right sort of doctor.
It’s crucial to distinguish between epileptic seizures, fainting, and dissociative seizures - because each condition requires different tests and treatments.
The ‘digital doctor’ study
The ‘digital doctor’ study is a talking head presented on a computer screen that asks questions about what happened, just like a human doctor would
The ‘digital doctor’ will also ask anyone who saw you lose consciousness some questions
All answers will be recorded by the computer and analysed automatically
The research team intends to ‘train’ the ‘digital doctor’ to use the answers of people who have experienced epileptic seizures, fainting, and dissociative seizures to decide the most likely cause
People who participate in the research project will be entered into a monthly raffle to win a £10 amazon voucher
After reading the Patient Information Sheet and the Witness Information Sheet, to take part you need to complete a “consent to contact” form: https://theipep.shef.ac.uk/interest. The information you provide on the form will be shared with a member of the research team who will use it to contact you about the research project.
If you would like further information at all, please contact Nathan Pevy via ndpevy1@sheffield.ac.uk
ALL RESPONSES GIVEN AS PART OF THIS SURVEY ARE CONFIDENTIAL
Closing date: 31 July 2022
Nathan Pivy, Researcher
National Mapping Survey of Epilepsy in Pregnancy - UK - Clinicians
Recent reports have consistently identified epilepsy as one of the leading causes of maternal deaths in the UK (MBRRACE-UK - MBRRACEUKreport).
We are undertaking the first-ever effort to map the care of pregnant women with epilepsy across the UK and would value your input to ensure we generate a realistic picture on the ground. These results will help inform policymakers, training, and future research on epilepsy in pregnancy.
This survey contains 23 questions and will take approximately 5-10 minutes to complete.
Consent will be assumed by agreement to participate in and complete the survey.
Closing date: TBC
Here’s the link: https://bham.onlinesurveys.ac.uk/national-epilepsy-mapping-survey-in-pregnancy
Wearable devices for seizure detection
Confidential questionnaire for patients, carers, and clinicians.
Cool opportunity to help improve the lives of millions.
Do you have/care for someone who has epilepsy and tonic-clonic/grand mal seizures? If so, read on!
Researchers are trying to understand how the current epilepsy devices (like Empatica, Epitel, Nightwatch, etc.) help us/don’t help us/need improvement - so that they can help to improve them for us through research.
Led by Prof. Sándor Beniczky, this important study will help ensure that researchers can focus on what patients and carers need to help improve their lives.
This research is very simple and only takes about 6 minutes.
Here’s the link: https://bit.ly/2Xbx9Ak
If you would like to have this survey in Dutch or German please contact us here.
ALL RESPONSES GIVEN AS PART OF THIS SURVEY ARE CONFIDENTIAL
Closing date: 10 Oct 2021
Visual Processing (ViPro) Study - UK
Are you a parent/carer of a child/young person with a neurodevelopmental condition?
Health researchers and professionals have become increasingly interested in sensory processing differences, such as sensory seeking (e.g. showing a fascination with shiny surfaces and busy patterns) or avoidance (e.g. having a strong preference for shady over brightly lit spaces), in neurodevelopmental conditions. This is because some studies suggest that the way in which children process sensory information can have a significant impact on their daily functional skills, play, social interactions, and emotional well-being. This research aims to develop a new questionnaire for parents and carers (the ViPro) to find out more about visual processing behaviours in neurodiverse children and young people. Identifying differences in visual processing could help with our understanding of the pathway from basic vision to behaviour.
Anais Smeets and Fiona Rattray, postgraduate students at the Institute of Psychology, Psychiatry & Neuroscience at King’s College London, are developing a new questionnaire for parents/carers, to help them find out more about visual processing behaviours in neurodiverse children and young people.
To help with this, they are seeking parents of neurodivergent and/or typically developing children ages 4-15 to take part in an anonymized, online survey. This asks questions about their child’s visual processing, mental health and wellbeing, sleep, and social behaviours. The survey takes around 30 minutes to complete, and participants may enter a raffle to win a £25 gift voucher as a token of gratitude for taking part (there is a 1 in 25 chance of winning!).
If you have any questions, please get in touch with Anais Smeets at anais.smeets@kcl.ac.uk.
Here’s the link: https://qualtrics.kcl.ac.uk/jfe/form/SV_87e41mLvXsdEzlk
ALL RESPONSES GIVEN AS PART OF THIS SURVEY ARE CONFIDENTIAL
Closing date: end of July 2021
Survey for People Living with Epilepsy and their Carers - Australia
Do you feel supported to live well with epilepsy? Do you believe there is enough support, resources, and information available?
If you think the state of epilepsy care in Australia could be improved, then we would like to hear from you.
We invite you to participate in an online survey to better understand your needs and the gaps that exist in epilepsy services and supports in Australia. The survey is open until May 31st and should only take you 20 minutes.
This research is being conducted as part of the Epilepsy Smart Australia Program Pilot and will be managed in conjunction with independent consultant KPMG. Your responses will remain anonymous.
Open to those aged 18+.
At the end of the survey you will have the opportunity to opt into a prize draw for a chance to win a $750 Mastercard gift card!
Access the survey by the link below to have your say today! insightssurvey.kpmg.com.au/wix/p588968759880
If you would like more information about how to get involved on a deeper level, please contact Mohana Ryan on 0436 404 895 or mryan@epilepsyfoundation.org.au.
Alternatively, you can email au-fm-EpilepsySmart@kpmg.com.au.
Closing date: 31 May 2021
Finding a Way: Videos to support families of children with a severe genetic epilepsy - Global
Are you a caregiver of a child with a severe genetic epilepsy?
We have co-developed a series of 6 short videos with parents of children with genetic epilepsy. The videos aim to provide additional psychosocial support to parents of children with complex neurological conditions. The “Finding a Way” study aims to explore parents’ impressions of the 6 videos.
Who can participate in this study?
Caregivers who have a child with a genetic (or suspected) epilepsy, with seizures that have required more than 1 or 2 medications to control are eligible to participate in this study.
What will participation involve?
If you would like to participate, you will be invited to complete a survey after viewing the 6 videos. Each video is about 4-6 minutes long. The survey will take about 5-10 minutes. You do not have to watch all the videos at once. If you like, you can take breaks and return to the videos and survey over time.
If you are interested in participating, please type in this link: https://bit.ly/2Po2RXd
“Finding a Way’ has been ethically approved by the Sydney Children’s Hospital Network SCHN HREC (LNR/18/SCHN/10”
Where to go for more information?
Please email: s.nevin@unsw.edu.au for more information
Closing date: 15 May 2021
