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ANCA Associated Vasculitis Patient Survey

posted 27 Jul 2018, 09:00 by Richard Eastoe   [ updated 27 Jul 2018, 09:07 ]
Survey on the Withdrawal of Maintenance Therapy for ANCA Associated Vasculitis and SLE 

Professors Lorraine Harper and Alan Salama are interested in studying people with ANCA Associated Vasculitis (AAV) and Systemic Lupus Erythematosus (SLE) to look at the effect of the withdrawal of immunosuppression on rates of infection versus the risks of relapse.

The study they are proposing would be aimed at patients who they identify as being at low risk of relapse and who would currently expect to be having conversations with their clinicians about reducing and coming off their medication.

As well as gaining a better understanding of the risks of infection versus relapse, the study also wants to see if they can understand what it is that allows some patients to remain in remission whilst others cannot. This could ultimately lead to a more customised and individual treatment for patients.

In order to find out what patients might think about this, Alan and Lorraine have set up an online questionnaire for those of you with AAV or SLE to fill in.

So, if you have either  :

     Wegener’s (Granulomatosis with Polyangiitis – GPA)
     Microscopic Polyangiitis (MPA)

     Churg Straus Syndrome (Eosinophilic Granulomatosis with Polyangiitis – EGPA)
     Lupus (SLE)

I’d definitely recommend that you have a look and have your say. It’s a great opportunity for us as patients to have a direct input into research into our condition. Potentially making a difference for future patients, if not ourselves.

Here’s the link to the online survey :