Priority Setting Partnership

The results of the Priority Setting Partnership for Research into autoimmune blistering diseases were published in the British Journal of Dermatology in September 2023.

 

The work was led by the James Lind Alliance (JLA) and resulted in the identification and prioritisation of the unanswered questions that need research into three auto-immune blistering diseases, bullous pemphigoid, pemphigus vulgaris and mucous membrane pemphigoid from patient, carer and clinician perspectives.

 

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

 

The top 10 research priorities voted for by patients and clinicians were:

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1. How effective, safe and cost-efficient is rituximab (or similar biologics) in BP/PV/MMP compared to standard steroid/immunosuppressant use, when should it be started, and should it be a 1st line treatment?

2. Are outcomes for patients with BP/MMP/PV better if treatment is started earlier and with 'stronger' treatments, such as an immunosuppressant or biologic, rather than escalating from 'milder' treatments if they do not work?

3. How should persistent mouth lesions be best treated in pemphigus and pemphigoid?

4. What is the best treatment for preventing and repairing scarring in MMP (medical and surgical)?

5. Is it possible to identify drugs that block the specific immune pathways for BP/MMP/PV rather than treat them with broad immunosuppressive drugs?

6. What are the risks and benefits of the different tablet and injection treatments used to treat BP/MMP/PV? (such as azathioprine, mycophenolate mofetil, methotrexate, cyclophosphamide, chlorambucil, nicotinamide, dapsone, intravenous immunoglobulin, plasmapheresis)

7. What factors predict relapses in BP/MMP/PV, how can the risk of relapse be reduced and how are relapses best treated?

8. What is the best/most effective dose to prescribe for steroid tablets in BP/MMP/PV including the starting dose, when and how quickly to reduce the dose, and when to stop?

9. Can we predict the response to treatment in BP/MMP/PV and what factors affect this?

10. What is the best way to treat skin wounds in BP/MMP/PV including how should blisters/ erosions be best washed and managed and does treatment vary according to body site?

 

A summary of the work is available on the Centre of Evidence Based Dermatology (University of Nottingham) website. The process and results are available on the James Lind Alliance website. The paper published in the British Journal of Dermatology is available here.