9/12 UM-KECC Seeks Volunteers to Test Questionnaire

The University of Michigan Kidney Epidemiology and Cost Center, under contract to CMS, is seeking dialysis patient and facility staff volunteers to provide feedback, via a half-hour phone call, on a draft of a short self-report questionnaire on patient life goals.  They seek both patients with experience on HD, PD, or HHD, and clinical staff (nephrologists, nurses, dieticians, social workers).  Those interested are asked to send a one-paragraph statement describing your interest and experience, to dialysisdata@umich.edu by September 12, 2019.

NW16 8/25 NKF/PKG Wellness Fair, Free BBQ Picnic

NKF and the Portland Kidney Group will present NKF’S Annual Kidney Wellness Fair & BBQ Picnic in Portland OR on August 25, 2019, featuring wellness exhibits, an art show, resources, prizes, and a free BBQ lunch.  Volunteers to help arrange the festivities are requested.  Find full details and registration information at https://s3-us-west-2.amazonaws.com/nwrn.org/files/N/PKG/PKG082519.pdf.

NW16 8/25 NKF/PKG Wellness Fair, Free BBQ Picnic

NKF and the Portland Kidney Group will present NKF’S Annual Kidney Wellness Fair & BBQ Picnic in Portland OR on August 25, 2019, featuring wellness exhibits, an art show, resources, prizes, and a free BBQ lunch.  Volunteers to help arrange the festivities are requested.  Find full details and register at https://s3-us-west-2.amazonaws.com/nwrn.org/files/N/PKG/PKG082519.pdf.

7/4 NW18 UCLA CORE Kidney Program Festival

The UCLA CORE Kidney Program has announced that they’ll be participating in the 115th Annual Huntington Beach Fourth of July Parade & Festival.  For more information on this and other UCLA CORE Kidney and UKEEP events, see https://www.uclahealth.org/core-kidney/upcoming-events.  For instance, their webinar on Alport Syndrome is coming up on July 11, 2019, as well as UKEEP’s patient meeting on High Blood Pressure on July 14.  Recordings of past UCLA CORE Kidney and UKEEP webinars, on topics such as Transplantation, Fabry’s Disease, Adult PKD, and more, can be found at https://www.uclahealth.org/core-kidney/past-events.

They’ve also announced the date for their 2020 UCLA Kidney Health Fair & Spirit Walk for Kidney Disease, May 17, 2020.  Find more information at https://www.uclahealth.org/core-kidney/kidney-health-fair.

2019 Kidney Walks

NKF has scheduled 2019 Kidney Walks for the following places and dates:

There appear to be none scheduled for Washington, Oregon, Montana, or Alaska.  For more information on Kidney Walks, see https://secure2.convio.net/nkf/site/SPageNavigator/kidney_walk_splash.html.

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.

4/5 DFC Technical Expert Panel Nominations

CMS has commissioned UM-KECC to assemble 10-20 volunteers for a Technical Expert Panel (TEP) to formulate a process for periodically resetting ESRD clinical quality Star-Rating criteria so that the Ratings continue to differentiate facility quality of care when treatment-quality trends reduce the variation between facilities.  Volunteers will include patients, caregivers, ESRD subject matter experts, methodologists, and specialists working on dialysis QI and healthcare disparities.  The TEP will require a one-day in-person meeting in Baltimore in June, plus 3-7 conference calls before and after.  Nominations must be submitted by April 5, 2019.  The current call for nominations doesn’t mention it, but past TEPs have reimbursed travel expenses.  For details and nomination forms, see https://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/MMS/TEP-Currently-Accepting-Nominations.html#a0305.