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.

4/4+ AAKP HealthLine on Pediatric Dialysis

AAKP’s HealthLine is hosting a series of three webinars on Pediatric Kidney Patients:

You can find a catalog of recordings of all past HealthLine webinars at https://www.gotostage.com/channel/6927452477730326277, and a general introduction to the HealthLine program at https://aakp.org/aakp-healthline/.

PATH-D Home Care Partner Guide

MEI has released a Spanish edition of their Partner Agreement on Tasks for Home Dialysis (PATH-D), or Acuerdo del Compañero sobre tareas para la Diálisis en el hogar.  Find it, for either PD or HHD, along with other useful home care resources, at https://www.homedialysis.org/life-at-home/care-partners.

NW16 National Board Patient Members Needed

Network 16 is seeking volunteers – patients or care partners – to represent the Network on two national committees:

ESRD National Coordinating Center’s Patient and Family Engagement Learning & Action Network:

  • Volunteers are asked to commit to participating in scheduled conference calls and webinars, usually every month or every other month
  • Centers for Medicare & Medicaid Services (Medicare) representatives are on the calls, providing an opportunity for volunteers to work closely with the federal government to improve patient care
  • The patient representative with the highest level of participation (attendance) gets to travel to Baltimore for a national meeting of the committee
  • Learn more about the committee at http://ncc.hshapps.com/en/patients/national-patient-and-family-engagement-lan-npfe-lan/.
  • We need one patient from Idaho, and one from Montana

Kidney Community Emergency Response Coalition (KCER):  This is a national group devoted to improving emergency preparedness and response for kidney patients and ESRD facilities.  This involves quarterly conference calls.  Learn more about the Coalition at http://www.kcercoalition.com/.  We need two patients from any Network state – Alaska, Idaho, Montana, Oregon, or Washington.

Anyone interested should email Lisa Hall at LHall@nw16.esrd.net or call 206-923-0714.

8/18 Compassionate Care Webinar

The Coalition for Compassionate Care of California (CCCC) will present an August 18, 2016 webinar on The End of the Rainbow: What matters most to LGBTQ persons during serious illness.  The webinar will cover key components of diversity, challenges of managing a diverse staff, and skills in creating protocols.  One CEU will be available for nurses and social workers.  Find more information and register at http://coalitionccc.org/training-events/webinars/ .

The same web page includes descriptions of and links to previous webinars and their recordings, including sessions on advance planning, intimacy, delirium, palliative care, communication, reimbursement, depression, California’s new EOL law, and POLST*.  Many more webinars, tools, and resources can be found at http://coalitionccc.org/training-events/

The CCCC Annual Palliative Care Summit will be held in Sacramento CA March 13-14, 2017, and CCCC is now calling for presentations.   Find out more at http://coalitionccc.org/training-events/annual-conference/cccc-annual-summit-call-presentations/ ,  http://coalitionccc.org/training-events/annual-conference/ (including links to presentations from earlier Summits),  and http://ccccsummit.org/ .

* POLST, or Physician Orders for Life-Sustaining Treatment, serve the same function for current-time treatment, as Advance Directives do for future treatment.  For more information on POLST, see http://www.polst.org/advance-care-planning/polst-and-advance-directives/ .