01. Why is this insights study so important? Expand The EB insights study will help ensure that the services and support that DEBRA offers to the EB community is in line with the key needs of the EB community. The insight will also help us to understand the most important issues affecting the EB community today and thus provide the focus to lobby for change tomorrow. The insights will also influence what research we fund in the future to find treatments and cures for EB. This project will provide the information and evidence we need to strengthen how we advocate for people living with EB to politicians, GPs, schools, local authorities – all the people who can help make the changes needed to help people live better with EB. In short it will help determine where our strategic focus should be as a charity to deliver the most for our members and the wider EB community. The more people who take part, the more representative it will be of the whole EB community. It is so important that we hear from people with all different types of EB, from different backgrounds and areas of the country, from people living with the condition to those people caring for or working with those with the condition, so that DEBRA can represent everyone affected by EB. It will be repeated every 2 years, so that we can respond to the changing needs of the community, and understand our progress better.
02. Who is running this study? Expand This is a DEBRA study, but it is being carried out by Synergy Healthcare Research, a market research agency. Synergy Healthcare Research works alongside pharmaceutical companies and not-for-profit organisations to produce high quality healthcare research. DEBRA will see only anonymised results of the study, and the interviews will be conducted by trained interviewers from Synergy, not DEBRA staff. Synergy has partnered with Hedgcombe Research for the interview stage of the study, to process all your questions about taking part, and organise the timings of interviews.
03. What will the research involve? Expand This study is now closed. Watch out for the results! This study involved two stages: Stage 1 will involve a 60-minute (or 2 x 30 minutes if preferred) webcam interview with a trained interviewer via Zoom, Teams or your preferred platform. We are looking to speak to around 20 people with lived experience of having EB, and carers of people with EB, to discuss their experiences of the condition. To thank you for your time and involvement we will send you a £60 voucher for either Amazon, Marks and Spencer, or John Lewis. Stage 1 has now ended, thank you to everyone who took part. Stage 2 is an online survey that we would like as many people as possible to participate in.
04. What does Stage 1 (the interview) involve? Expand This stage of the study is now closed. People who took part were asked about various topics to help us gain a better understanding of the impact EB has on their life as well as information and support they have found useful. They were asked about the following: how EB affects their day-to-day life their diagnosis and symptoms the contact they have had with medical professionals and how this has impacted their day-to-day life the treatments they take (or have taken in the past) the impact of EB on their mental health any support or additional care they have received for EB their aspirations for the future challenges they may face. This study will help us access the right services for people with EB today and understand the most important issues to lobby politicians for support and funding for EB to change tomorrow. The results of the research will also play a vital part in deciding what campaigns we run and what research we fund. It will determine what we do and how we do it.
05. What does Stage 2 (the online survey) involve? Expand This stage of the study is now closed. Stage 2 of the study was an online survey asking you a series of questions about life with EB; from diagnosis to treatments, to how it impacts your day-to-day life, and information and support you have found useful, taking around 20 minutes to complete. Anyone who took part in the online survey was entered into a prize draw to have a chance at winning some great prizes.
06. Prize draw terms and conditions Expand Anyone who took part in the EB insights survey was entered into a prize draw to win one of three fantastic prizes. To be entered into the prize draw you must have completed the survey by Friday 5 May 2023. If you are one of our winners, and you win a prize that you may not be able to benefit from fully due to your EB, every effort will be made to provide a prize of comparative value that you can benefit from.
07. Who can take part? Expand Stage 1 (the interviews), this stage of the study has now closed. Stage 2 (the online survey), this stage of the study has now closed. Children aged 15 or under cannot take part in Stage 2 of the study (the online survey). This is due to minor safety and the difficulty of obtaining verifiable formal parental consent for an online survey. However, parents and guardians of individuals aged 15 and under may participate on their behalf.
08. What type of EB is this for? Expand For this study to be a success, it’s essential that those affected by any of the four main types of EB takes part – EB Simplex, Dystrophic EB, Junctional EB, Kindler EB..
08. Why is DEBRA spending money on this sort of study? Expand DEBRA is only funding 16% of this study. The rest is being funding by donations from two pharmaceutical companies, Amryt Pharma and Krystal Biotech. Neither of the pharmaceutical companies have any involvement in the design, execution, or analysis of the study, and are purely providing funding. The reason for doing this study is to ensure members and their needs are at the centre of everything we do in order to improve quality of life for people living with EB, which is central to our mission as a charity.
10. Can I still take part if I don’t have an official diagnosis of EB? Expand Yes. We understand the difficulties there can sometimes be in getting an official diagnosis, and this therefore is an important aspect of your experience of EB.
11. What if I need more support to take part in this research? Expand We'd like as many people affected by EB as possible to take part, so if you have any additional needs to be met to enable you to take part in this study, please contact [email protected], and we will do our best to help you.
12. How will my information / answers be used? Expand The research will be conducted in accordance with the British Healthcare Business Intelligence Association (BHBIA), and the Market Research Society (MRS) codes of conduct and complies fully with Data Protection legislation. This means that anyone who agrees to take part in the research will remain anonymous. No names or contact details will be shared with any third party. You do not have to answer any questions you don’t want to and you can withdraw from the research at any time. Your individual responses will not be shared with DEBRA either. All identifiable personal data will be deleted at the end of the study. The answers from both the survey and the interviews will be analysed by Synergy, who will then create an anonymised report, which they will share with DEBRA. We will not see individual answers to either the survey or the interview. We will use the anonymised report to shape all of our plans, and many of our campaigns, to try and address the key issues that arise from the report. We’ll also share the anonymised reports with key stakeholders, like politicians. The results of this study may also be published in an academic article. This study has now been completed, but we will repeat this study every 2 years to see the progress we’re making, and to address the changing needs of the EB community.
13. Who will see my answers? Expand Members of Synergy Healthcare Research will see your answers as they will be conducting interviews and analysing the results of the online survey. Synergy will not share this data with any other organisations or individuals, other than sharing the anonymised results with DEBRA. The pharmaceutical companies funding the majority of this study will only see whatever reports DEBRA publish based on the anonymised information from Synergy. DEBRA will share the anonymised reports and key insights with people and organisations that we think can help us deliver our goals for the EB community, for example we will share the anonymised report to support our lobbying plans and to help secure additional funding to find treatments and cures.