Welcome to the Chronic Kidney Disease Insider Newsletter. If you are living with chronic kidney disease (CKD) on dialysis, have had a kidney transplant or are helping care for someone who is, this newsletter was created for you and your family! The content is meant to keep you and/or a family member up to date on the latest information to help you manage your health now and in the near future in consultation with your physician.
In this month’s CKD Insider:
News from Kidney Organizations
AAKP Keeping Your Dialysis Access Site Healthy Webinar
The American Association of Kidney Patients (AAKP) recently presented this Healthline webinar to help you learn how to keep your access site healthy by preventing infections and minimizing the risk of trauma or injury to your access site. The tips shared can be used for any type of access site. Remember, it is important to keep your access healthy even after you have a kidney transplant in case you need it again in the future.
Presented October 26th: View replay here.
ASN Kidney Week Conference
The American Society of Nephrology (ASN) is hosting the annual ASN Kidney Week Conference this week in Philadelphia. The Kidney Week Conference is an opportunity to learn about the latest advancements and meet with other people and organizations who support the CKD community.
Dates: November 2nd - 5th, 2023
Learn more and register here.
Kidney Solutions Transplant Experience Support Group Meetings
If you are looking for a kidney donation and/or want to learn about other people's experiences visit Kidney Solutions. Kidney Solutions assists people looking for a living kidney donor and helps them and their families through the pre- and post transplant process.
Virtual Support Meetings Every Monday and Thursday at 6:00 pm CST
Join the support group, donate or learn more here.
The FDA is hosting a public workshop to promote drug development in kidney transplantation
The US Food and Drug Administration (FDA) is hosting a hybrid workshop titled Endpoints and Trial Designs to Advance Development in Kidney Transplantation. The stated goal of this workshop is to “stimulate discussion between the FDA, academics, and industry representatives on endpoint and trial design to promote drug development in kidney transplantation.”
The American Association of Kidney Patients (AAKP) encourages patients and allies to attend, listen and ask questions regarding the call for the FDA to update the current 1-year kidney transplant survival criteria to include clinical trial endpoints for long-term transplant survival. The AAKP states that the continued use of long-term immunosuppressive drugs that make patients susceptible to infection and can impair the newly transplanted kidney must be reevaluated by expanding clinical trial endpoints. Based on an AAKP survey of over 1,200 patients, the majority of respondents agree.
In Person & Virtual Event
November 9th from 8:00 a.m. - 4:30 p.m. ET
You can learn more about the workshop and register here.
NKF Kidney Walks
The National Kidney Foundation (NKF) hosted Kidney Walks are an opportunity to help fund innovation in kidney disease research, advocacy and transplantation. These in person walks also are a great opportunity to meet people who are going through similar experiences in a relaxed environment as you walk and talk you will get to learn from each other and celebrate your successes.
Texas Kidney Walks in Houston & Austin: Sunday, November 5 & Sunday, November 12, 2023
Find all Kidney Walk Details here.
AAKP Policy Roundtable Event
AAKP is hosting this hybrid in person and online event to hear from people with kidney disease and their care partners. Topics to be discussed include patient-centered medicine needs and alignments on what is needed in terms of policy, law, regulation, and payment. These discussions are important to provide consensus on the priorities in kidney care.
In Person & Virtual Event
November 14, 2023 from 1:30 p.m. - 3:30 p.m. ET.
Space is limited for in-person attendance at The National Press Club in Washington, D.C. Space and is confirmed on a first come, first reserved basis. You can participate virtually as well.
Sign up here.
KDIGO Clinical Practice Guideline for the Evaluation, Management, and Treatment of Autosomal Polycystic Kidney Disease is now available for public review
KDIGO is a global organization developing and implementing evidence-based clinical practice guidelines in kidney disease. It is an independent, volunteer-led, self-managed foundation. This most recent guideline for public review has 10 chapters associated with it. You can provide feedback on any or all of the topics included. They welcome your candid comments and suggestions.
Submit comments by Friday, November 17th.
KDIGO Publishes Trends and Perspectives for Improving Quality of Chronic Kidney Disease Care: Conclusions from a KDIGO Controversies Conference
Kidney Disease: Improving Global Outcomes (KDIGO) published its CKD Guidelines based on conclusions from its Controversies Conference. In summary, since the original 2012 guidelines were published there has been an expansion of available tools for physicians to use to diagnose and treat people with CKD that include both pharmacologic (example: SGLT2 inhibitors) and non-pharmacologic interventions. This growth of opportunities for diagnosis and treatment makes physicians optimistic, and requires a proactive approach to ensure that new diagnostic measures and treatment options are utilized.
Read the full published conference report here. You can also visit the conference website for more resources and recordings of presentations from the KDIGO Controversies Conference.
Your Fun Tip of the Day!
Time to Enjoy Fall Foliage and Have Some Halloween Fun!
Depending on where you live, the fall foliage can be at its peak this time of year, with the trees leaves turning gorgeous colors of yellow, orange and red! Don’t forget to take time to view the beauty around you. Take a walk or a drive and get inspired in more ways than you might expect! Some states like NY have their own website (NY State Foliage Report) devoted to where you can find the best foliage views. Check out your state website to see if they have something similar. If you live in a state that doesn’t have this seasonal change, you can take a trip to a new location that has its own unique beauty or go to a pumpkin farm and pick out your own pumpkins for Halloween!
If you haven’t decorated for Halloween yet, and want to join in the lighthearted celebration, below are some quick tips to get your house or the people in it decorated fast!
Quick and easy house decorating ideas:
Fast Halloween costume design ideas
If you can’t meet in person on Halloween, you can create a quick Halloween outfit and get on a video call with friends and family and share some Halloween fun virtually!
What it is: This month, the US Food and Drug Administration (FDA) approved Tenapanor for adults on dialysis who do not tolerate or respond to phosphate binder therapy, making it the first phosphate absorption inhibitor to be approved for those with CKD. Tenapanor lowers serum phosphate by inhibiting the absorption of phosphate rather than binding phosphate in the blood serum.
Why it is important to you: Elevated phosphorus in the blood serum can lead to heart disease. If you are having trouble managing your phosphorus levels with phosphate binders and your diet, Tenapanor could be an option for you. Check with your physician to see if Tenapanor can help you maintain your phosphate levels.
Several clinical trials evaluated Tenapanor before approval, including three Phase 3 trials: PHREEDOM, BLOCK and AMPLIFY. You can read a summary of those trials here, and the FDA records of approval can be found here.
If you found this informative, please pass this on to anyone you know who could benefit from this information!
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