Tuesday, June 07, 2011
Eczema Treatments Priority Setting Partnership
If you, or someone close to you, are one of the almost 6 million eczema sufferers in the UK you know first hand the challenges associated with living with this unpredictable, painful and incurable condition.
Exacerbated by a lack of research into available and effective treatments, one of the most frustrating aspects of eczema remains the process of trial and error required to design and implement an effective treatment regime to both strengthen the skin barrier and manage the inflammation, redness and incessant itch.
As part of its commitment to improving patient care in the UK, the National Eczema Society is therefore calling on sufferers across the country to draw on their own experience of eczema this summer to help shape future treatment research. The Eczema Treatment Prioritisation Exercise is being run by the highly regarded University of Nottingham and the James Lind Alliance. By means of a two part survey, the objective is to identify questions that patients, carers and health professionals think are important about eczema treatments which have not yet been researched and then to establish which of those questions need to be answered as a priority.
Respondents are initially asked to submit up to five questions that they would like answering on the treatment of eczema. These results will then be collated and respondents invited to rank the most frequently asked questions in order of importance to them. The top ten questions, as identified and ranked by respondents, will subsequently be developed into research proposals.
Chief Executive of the National Eczema Society, Margaret Cox, feels this is a crucial step forward in addressing the issue of eczema in the UK. “With the such a huge number of eczema sufferers in the UK, the need for greater understanding of existing treatments and how best to employ them is vital to the successful management of what can be a lifelong condition. There remains a significant lack of evidence in this field and we aim to help address the issue this summer with the support of both patients and their carers. By putting the patient at the heart of the research process and identifying which questions are of most importance to them we can help to ensure that precious research funding is directed towards providing the answers that would have the most impact on both sufferers and those who care for them.”
If you would like to be involved in shaping the future of eczema research you can either complete the short survey online at http://www.homeforeczema.org/ or, if you do not have internet access, you can request a paper version from the National Eczema Society's helpline on 0800 089 1122. The survey will be available to complete until the end of July with the results of the project due to be published in Spring 2012. This is a major oportunity to have your say and to influence the decision makers over which research projects they undertake. The results of this exercise will determine current uncertainties in the treatment of eczema and the information gained will be used to guide the design of future eczema research projects and research funding opportunities.
Please, if you can, complete the survey. It is so important and will affect which research projects are undertaken over the coming years. If you would like to take part in this exercise, please click the panel on the home page of the H.O.M.E website that asks "Do you have unanswered questions about the treatment of eczema?" Your time will count for a lot. Thank you.
Topic(s): Current Research, Current Trials, National Eczema Society, NSGCCE, Posts from Colin