SONG Glomerular Disease Survey

The Standardized Outcomes in Nephrology – Glomerular Disease (SONG-GD) study is an international initiative to identify outcomes in glomerular disease that are important to patients, caregivers, clinicians and other health professionals.  This will inform the development of core outcomes that are important and relevant to measure and report in glomerular disease.

SONG-GD includes a voluntary 15-minute survey to help determine a core outcome set for glomerulonephritis trials, to be taken by anyone who meets the following criteria:

  • You are 18 yrs of age or older
  • You are one of the following:
    • A patient with any major form of glomerular disease*, at any stage of development**
    • A family or household member of a patient with any major form of glomerular disease*, at any stage of development**
    • A caregiver for a patient with any major form of glomerular disease*, at any stage of development**
    • A healthcare practitioner or trainee, social worker, dietitian, pharmacist, psychologist, physiotherapist, researcher, policy-maker, or other stakeholder who deals with glomerular disease
    • You work in an industry that deals with glomerular disease
  • *Major forms of glomerular disease include:
      • ANCA vasculitis
      • Anti-GBM disease
      • Anti-glomerular basement membrane disease
      • Anti-neutrophil cytoplasmic antibody associated vasculitis
      • C3GN
      • Complement-mediated glomerulopathy
      • Focal segmental glomerulosclerosis
      • FSGS
      • Goodpasture’s disease
      • Goodpasture syndrome
      • GPS
      • Henoch-Schoenlein purpura
      • IgA nephropathy
      • IgA vasculitis
      • Lupus nephritis
      • Membranoproliferative glomerulonephritis
      • Membranous nephropathy
      • Minimal change disease
      • MPGN
  • **Stages of kidney disease development include:
      • Normal kidney function
      • Chronic kidney disease
      • ESRD, dialysis, or transplant

Answers will be completely anonymous and analyzed only in combination with other responses.  Find the survey at https://sydneypublichealth.au1.qualtrics.com/jfe/form/SV_djzDXYqzIQ0dMGN.  You will be asked for your name and email address so SONG-GD can send you a short follow-up survey.

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