Auto-immune blistering diseases are a group of rare skin conditions where the body attacks healthy skin or mucous membranes by mistake, which causes blisters to form.
More research is needed into the best ways to treat these diseases. To make sure that the most important questions are being answered by research, we are carrying out a priority setting partnership (PSP) in collaboration with the James Lind Alliance (JLA) to identify and prioritise unanswered questions about three auto-immune blistering diseases, bullous pemphigoid, pemphigus vulgaris and mucous membrane pemphigoid from patient, carer and clinician perspectives.
This is a James Lind Alliance PSP, funded by Nottingham Hospitals Charity and is co-ordinated by the Centre of Evidence Based Dermatology.
Survey 1 is now closed and the data is being collated.
Survey 2 will be released later this year.
The first stakeholder meeting was held in May 2019. A PSP goes through the following stages:
1. Survey 1 will collect all uncertainties about treatments for bullous pemphigoid, pemphigus vulgaris and mucous membrane pemphigoid from patients and their carers, and healthcare professionals.
2. Submitted uncertainties collated and true uncertainties identified.
3. Survey 2 will rank the most frequently raised questions about uncertainties in order of importance
4. Final workshop will involve patients with bullous pemphigoid, pemphigus vulgaris and mucous membrane pemphigoid, their carers/partners, and healthcare professionals to prioritise the submitted questions.
5. Top 10 uncertainties will be published and research proposals developed to answer the most important questions.
Complete the survey! If you are a patient with bullous pemphigoid, pemphigus vulgaris or mucous membrane pemphigoid, a carer/family member, or a healthcare professional, we want you to tell us what questions you have that you would like to see investigated by researchers. Please send us a message so we can send you a copy of the survey. Please say whether you want an online survey or a paper copy in the post.
The treatment uncertainties identified during this project will be published on the JLA website and used to inform future research funding.
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