The Yale New Haven Health Services Corporation’s Center for Outcomes Research and Evaluation is convening a Technical Expert Panel (TEP) on Development of a Quality Measure Assessing Delay in Progression of CKD for CMS. Nominate yourself or others before January 13, 2020. Find details at https://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/MMS/TEP-Currently-Accepting-Nominations#a1213, and download nomination forms from https://www.cms.gov/files/zip/development-quality-measure-assessing-delay-progression-chronic-kidney-disease-ckd.
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
- Complement-mediated glomerulopathy
- Focal segmental glomerulosclerosis
- Goodpasture’s disease
- Goodpasture syndrome
- Henoch-Schoenlein purpura
- IgA nephropathy
- IgA vasculitis
- Lupus nephritis
- Membranoproliferative glomerulonephritis
- Membranous nephropathy
- Minimal change disease
- **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.
UC Irvine Health will present a free March 16, 2019 World Kidney Day symposium in Orange, CA on Kidney health, featuring leading experts in Nephrology, Urology, Transplant, and Nutrition. Patients, providers, and community members are all invited to enjoy a day of education, health screenings, refreshments, and live entertainment. For details see https://twitter.com/IFKF_/status/1103801441846587392 and https://www.facebook.com/events/638668909886763/?notif_t=event_invite_reminder¬if_id=1551199891724380.
The UCLA Health CORE Kidney program will present a February 21, 2019 webinar on Living Kidney Donation. For details and pre-registration, see https://s3-us-west-2.amazonaws.com/nwrn.org/files/N/UKEEP/ucla022119.pdf.
UKEEP will host a February 24, 2019 workshop on Kidney Disease: What You Should Know in Santa Monica CA. See https://s3-us-west-2.amazonaws.com/nwrn.org/files/N/UKEEP/UKEEP022419.pdf for details and RSVP information.
The CORE Kidney program will also present:
- March 2, 2019 Diabetes Patient Conference; see https://s3-us-west-2.amazonaws.com/nwrn.org/files/N/UKEEP/UCLA.dm030219.pdf for details and pre-registration information
- March 10, 2019 UKEEP PKD Update
- March 21, 2019 webinar on PD
- April 11, 2019 webinar on Fabry’s Disease
- May 2 webinar on the Kidney Health Fair
- May 5, 2019 Kidney Heath Fair at the Beach and Spirit Walk; for more information see https://www.uclahealth.org/core-kidney/kidney-health-fair.
Find more information, and recordings of earlier CORE Kidney and UKEEP programs, at https://www.uclahealth.org/core-kidney/, along with information about the UCLA PKD program and other related educational outreach.
CMS has updated its web page on the Medicare Diabetes Prevention Program Expanded Model. Diabetes is a leading cause of kidney disease, and this Medicare/CDC Program has been shown to reduce by up to 70% the progression from pre-diabetes to diabetes itself. Find the web page at https://innovation.cms.gov/initiatives/medicare-diabetes-prevention-program/.
This year’s topic for the Renal Support Network’s Annual Essay Contest, for people diagnosed with CKD, is Who Inspires, Encourages, or Educates You to Live Well with Kidney Disease? First prize is $500. Winning entries are published in print and online. Essays must be submitted by August 10, 2018. For full information and to enter the contest, see http://www.rsnhope.org/essay-contest/.
The NIH’s National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) is depleting their stock of hard copy publications on diabetes, digestive diseases, nutrition, and kidney disease, in English and Spanish. Up to 25 copies of most titles are available to order free of charge if shipped to addresses within the United States, until August 15, 2017. See NIDDK’s Online Catalog at https://catalog.niddk.nih.gov/Catalog/ .