01. Why is this project so important? Expand This is the first project of its kind to identify the top unanswered questions about all types of EB. We will be working with the whole EB community, including some of the international EB community, to come up with the 10 most important questions about EB that could be answered through research. This means that DEBRA UK, and other organisations that fund EB research, will know where they should focus their research strategies and spend for maximum impact for the EB community. If we are all pulling in the same direction, we hope that treatments and services to help those living with EB can be found faster.
02. I’ve already filled out surveys from DEBRA recently Expand We know that our members have responded to several surveys from us in the past. All of these insights, particularly from the EB Insights study in 2023, are being used in this project too. Reviewing the current research, including surveys such as EB Insights study, forms an important part of the James Lind Alliance process, and we have also used it to inform the design of our survey.
03. Who is running this study? Expand This is a DEBRA UK-led project, and we are being guided by the James Lind Alliance in their robust method for identifying the key unanswered questions for EB. This involves forming a “Priority Setting Partnership” (PSP), represented by many different people and organisations in the EB Community, to drive the project forwards. We are collaborating with DEBRA Canada and DEBRA Ireland, and we will be reaching out to many other organisations in the UK and globally with an interest in EB. Our EB PSP Steering Group guiding this work comprises DEBRA UK members, DEBRA Canada and DEBRA Ireland members, EB healthcare professionals, DEBRA UK staff, Synergy Healthcare Research and a James Lind Alliance consultant. Synergy Healthcare Research is designing and running the surveys for this project, and they will be analysing the data as the Information Specialists for this project.
04. Who is the James Lind Alliance? Expand The James Lind Alliance (JLA) is a non-profit making initiative bringing patients, carers and clinicians together in JLA Priority Setting Partnerships (PSPs). The JLA PSPs identify and prioritise unanswered questions or evidence uncertainties that they agree are the most important, so that health research funders are aware of the issues that matter most to the people who need to use the research in their everyday lives. You can find out more here
05. Who is Synergy Healthcare research? Expand Synergy Healthcare Research is a market research agency. They work alongside pharmaceutical companies and not-for-profit organisations to produce high quality healthcare research. They will be analysing all of the data from the surveys for this project. You can find out more about them here
06. 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, unless you choose to share your identity with us. 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 to the survey questions cannot be linked back to you. Any personal data collected about you will be treated confidentially and only used for the purposes of this project. It may be stored beyond the end of this project, for up to 12 months. At any time you can ask to know what personal data are being held about you and for these to be amended or destroyed. Please contact [email protected] if you have such a request. For more information about your rights please see Synergy's privacy notice, which is available at https://www.synergyresearch.co.uk/privacy-policy/ The answers from the surveys will be analysed by Synergy Healthcare Research. All the survey answers will be combined together and will be used to create an anonymised report, which Synergy will share with DEBRA UK and the EB Priority Setting Partnership. DEBRA UK will use the anonymised report to identify the most important unanswered questions about EB as determined by the EB community. We’ll also share the anonymised findings from the survey with key stakeholders, like politicians, research organisations, or the wider DEBRA and EB community. The results of this study will also be published on the DEBRA UK and JLA websites, as well as potentially other academic journals.
07. 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. 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.
09. Why is DEBRA spending money on this sort of study? Expand New treatments for EB, and even new healthcare systems to support those living with EB, are only achievable with sustained, quality research. And research is very expensive. By aligning the EB community around the questions that we most need to answer through research in order to have the biggest impact on the lives of those affected by EB, we are ensuring that everyone is spending their research budgets wisely. We feel that investing in getting the EB research priorities right at the start will mean that we are using our research budget responsibly. EB research is fundamental to our mission as a charity, and the James Lind Alliance process is a robust and internationally recognised process for identifying priorities for any given condition. DEBRA UK, DEBRA Canada and DEBRA Ireland are all funding this project together.
10. 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.