Treatment of Pemphigus & Pemphigoid PSP

Treatment of Pemphigus and Pemphigoid Priority Setting partnership

Overview

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 was a James Lind Alliance PSP, funded by Nottingham Hospitals Charity and is co-ordinated by the Centre of Evidence Based Dermatology.

Results

We would like to thank everyone who took part in this PSP, especially patient support group PEM Friends .

The results of this PSP have been published in the British Journal of Dermatology and the top ten is on the James Lind Alliance website.

Key Facts

What did the PSP involve?

The first stakeholder meeting was held in May 2019. A PSP goes through the following stages:

1. Survey 1 collected 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 ranked the most frequently raised questions about uncertainties in order of importance

4. Final workshop involved 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 published and research proposals developed to answer the most important questions.

How can I take part?

Sorry, the surveys have closed and project completed. Please send us a message if you would like us to send you the results from this exercise.

What will happen to the results of the study?

The treatment uncertainties identified during this project will be published on the JLA website and used to inform future research funding.