NKF and the Johns Hopkins University Epidemiology Research Group in Organ Transplantation are seeking adult volunteers on hemodialysis who plan to get a COVID-19 vaccination, to participate in an observational study on COVID-19 antibodies. Participation will involve giving blood samples before and after vaccination. For details on eligibility, enrollment, and the study, see https://covidesrd.org/.
The Network 16 and Network 18 Patient Newsletters for Fall 2020 have been posted to the Network websites, in both English and Spanish. They include articles on the Medicare Open Enrollment Period (which is open through December 7, 2020), Vocational Rehabilitation, and Dialysis Facility Compare, plus short notes on heart health and fluid management, filing a grievance, and (free) subscriptions to the Network Newsletters and blog. The Network 18 Newsletter also includes a short note on volunteering to help the Network improve patient care. Find the English and Spanish versions of the latest Newsletters at https://www.nwrn.org/patients-a-family/ptedres/quarterly-patient-newsletter.html for Network 16, and https://esrdnetwork18.org/patients/newsletters/ for Network 18.
AAKP will present a 1½-hour July 9, 2020 webinar on Clinical Trials: Expanding Opportunities for All Kidney Patients in the Midst of COVID-19 and Beyond. The webinar aims to ensure that all kidney patients are invited and encouraged to participate in clinical trials that are relevant to their situation. For more information and to register, see https://register.gotowebinar.com/register/7296799374118412557.
Network Provider Newsletters for Summer 2020 have been published. They include articles on:
- Network Support for COVID-19.
- The ESRD QIP.
- New QIP website interface.
- Staff Burnout.
- Patient Psychosocial Needs.
- NCC “Web Hub” for Patients (Network 16 only).
- Seeking Volunteers for Spanish-Speaking PAC (Network 18 only).
- Data Currency in CROWNWeb.
- Links to Network Patient Newsletters.
- Patient Emergency Preparedness.
- Interruptions in Service.
- KCER Newsletter.
- Staff Changes.
- Link to Events Calendar (Network 18 only).
- Network email Updates.
Find them at:
- Network 16: https://s3-us-west-2.amazonaws.com/nwrn.org/files/NL/16.Provider+Newsletter-++Summer+2020.pdf.
AAKP is asking dialysis patients to take a survey on their experience with and concerns about COVID-19. AAKP’s introduction follows:
“AAKP works closely and constructively with Federal and state officials on health issues of concern to both the general public and those who are immunocompromised – like kidney patients. As we have in the past with flu and vaccines, we are interested in relaying your insights about the Coronavirus to relevant officials so that their actions and communications are better informed and responsive to your concerns. As a dialysis patient, has the Coronavirus impacted your thinking or behavior? What communication, if any, have you, as a dialysis patient, received with your healthcare team and/or dialysis facility? TAKE A FEW MINUTES, TELL US YOUR THOUGHTS! AAKP will share insights gleaned from you with the brave medical and scientific professionals fighting the Coronavirus! … Answers and any comments provided will not be attributed to any individual – the FLASH SURVEY is completely anonymous.”
Find the survey at https://www.surveymonkey.com/r/DialysisandCoronavirus. They do not indicate how long the survey will be available.
In honor of National Kidney Month, AAKP Healthline will present a March 24, 2020 webinar on AAKP Ambassadors: Thriving with Kidney Disease and Inspiring Others. The program will feature current AAKP Ambassadors discussing “What I know now that I wish I knew when first diagnosed,” “Why it is important to be your own best advocate, and “How I am making a difference through AAKP.” For details and registration see https://aakp.org/programs-and-events/aakp-healthline/.
Donate Life Northwest remind us that February 14, 2020 is National Donor Day, and provides links to facilitate its celebration at https://mailchi.mp/donatelifenw.org/february-2020-donate-lifeline?e=d7486be0ed. This web page also provides information about their March 12, 2020 Volunteer Orientation course in Portland, their Fundraising Team for the April 24-26, 2020 Eugene Marathon, planned giving, and their Threads of Life quilting project (quilt squares are due February 17, 2020).
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.
AAKP’s Center for Patient Research & Education (https://aakp.org/center-for-patient-research-and-education/research/) is collaborating with the FDA to foster engagement with patients, caregivers, and patient advocates throughout the development, evaluation and surveillance of medical devices in order to gain insight from patients and caregivers about their experiences living with their diseases as well as experiences with medical devices intended to diagnose and treat their medical conditions. To further this effort, AAKP asks members to take a brief anonymous survey about the devices you have used. Find the survey at https://www.surveymonkey.com/r/GGTZNKX.
NKF and the Portland Kidney Group will host its Annual Holiday Party November 10, 2019 in Portland OR. Food and drinks will be provided, and family and friends are invited. The party will feature a dietitian talking about hearty but kidney-friendly holiday cooking. Volunteers are needed to help get everything ready. You’re asked to RSVP by November 4, 2019. Find more information on the Party, on volunteering, and on how to RSVP, at https://s3-us-west-2.amazonaws.com/nwrn.org/files/N/PKG/PKG1119.pdf.