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Important Public Health Study -SONG Survey

Saturday, February 16, 2019

Please can I ask you to consider doing this survey.

Hi Everyone,

Please can I ask you to consider doing this survey, https://sydneypublichealth.au1.qualtrics.com/…/SV_djzDXYqzI… which is an international effort to try and understand what are the important outcomes for patients, carers and nurses/doctors when we test a new drug in a clinical trial in glomerular disease. It is very likely that the results of this study will alter the way we do studies of new treatments and ensure that all studies include outcomes that are important to you! The study is aiming to get at least 5000 UK patients and carers to fill in the survey-that way we can shape future clinical trials.

The survey includes all those with Glomerular Diseases which includes Nephrotic Syndrome, IgA nephropathy,IgA vasculitis/Henoch Schonlein Purpura,Membranous Nephropathy,Focal Segmental Glomerulosclerosis (FSGS), Minimal Change Disease,Lupus nephritis, Membranoproliferative Glomerulunonephritis,C3 Glomeruluopathy, Alports,Thin membrane Disease,anti-GBM disease (Goodpasture's),Fibrillary Glomerulonephritis,vasculitis- microscopic polyangiitis (MPA), Wegeners granulomatosis (granulomatous polyangiitis- GPA)

Thankyou so much! Best wishes,Wendy

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