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March 2022 CKD Insider Newsletter

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: Home dialysis advocacy in action, Kidney transplant webinar, Clinical trials currently enrolling and your Fun Tip of the Day!


Advocacy in Action

Home dialysis advocacy by Innovate Kidney Care (IKC)

If you are considering moving to home dialysis versus in-center dialysis you might have come across some challenges including your dialysis center not offering training for you to learn how to do dialysis at home. Innovate Kidney Care is a group of patient and physician advocates, health benefits companies, care providers, and medical device manufacturers collaborating to remove barriers to treatment choice for kidney patients and ensure more people can easily access dialysis at home.

With this in mind they responded to the request for information that the Centers for Medicare & Medicaid Services (CMS) put out in relation to End Stage Renal Disease (ESRD) facilities, transplant programs, organ procurement organizations and related issues. The IKC letter to CMS details improvements needed and is summarized on page 2. You might see that you have experienced similar issues.

They also recently put together a position paper with recommended changes to conditions for coverage to improve and modernize kidney care that you can read on their website. Three key focus areas of this paper are 1) Alleviating the Nursing Shortage via Multidisciplinary Care Teams 2) Promoting Competition and Patient Choice 3) Furthering Patient Centricity.

If you agree with the points this group is highlighting you can support them by providing your comments via the federal website: let your voice be heard.


Your Fun Tip of the Day!

It's time to dance!

Have you tried starting your day by dancing? If you haven’t it’s a great way to begin your day on a positive note and infuse your day with positivity whenever you need that extra boost. The best part is you can do it alone, in a group, while sitting or standing upright, once you get your body moving you might be surprised how quickly you find yourself smiling! If you need some inspiration check out these old black and white movies to help get you in a dancing mood or just for some pure family watchable entertainment!

Some movie ideas to get you started! To learn interesting tidbits of information about the history behind these movies watch them on the TCM (Turner Classic Movies) channel.

  • Any of the 10 Fred Astaire and Ginger Rogers movies (The Gay Divorcee (1934), Shall We Dance (1937), Swing Time (1936), Top Hat (1935))

  • Stormy Weather (1943) (Lena Horne, Bill Robinson - includes over 20 musical dance numbers)

  • Any Gene Kelly movie (For Me and My Gal (1942 debut with Judy Garland), Anchors Away (1945 with Frank Sinatra), On the Town (1949 with Jules Munshin and Frank Sinatra), Singin' in the Rain (1952 with Donald O'Connor and Debbie Reynolds), American in Paris (1951 with Leslie Caron & George Gershwin music composition), and a fun color film Gene Kelly directed: Hello Dolly 1969 (Barbara Streisand and Walter Matthau)

  • White Christmas (1954 with Bing Crosby, Danny Kaye and Rosemary Clooney)

These are light hearted movies that focus on the dancing and singing. If you are interested in more modern dance films there are an increasing number of these made some of which are remakes of the movies above!


Kidney Transplant Educational Webinar

What it is: A 15 minute webinar: Living Donors and the Transplantation Process webinar with nephrologists and a transplant coordinator from Columbia University/New York-Presbyterian Hospital. This short recap provides information regarding the journey of adults and children with CKD from diagnosis to dialysis and post - transplant. The original 1 hour webinar can be see here: Lyfebulb - Living with Chronic Kidney Disease: What are My Options Webinar. Why it's important: If you are new to having CKD or are a care partner who wants to learn more, this quick overview that includes a review of the function of the kidneys to considerations for a kidney transplant might be useful for you.


Clinical Trials Recruiting

There are several clinical trials currently recruiting participants with CKD. Brief overviews are included below. A review of the meaning behind the different phases of clinical trials can be found on the U.S. FDA website here. If you are interested in participating in any of these consult with your nephrologist to determine if these are appropriate for you.

These clinical trials are listed on the Clinical website with the following caveat: The safety and scientific validity of the studies below are the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Know the risks and potential benefits of clinical studies and talk to your health care provider before participating. Read their disclaimer for details.

1. Study of Sulforaphane in Chronic Kidney Disease

This is a phase I and II clinical trial at the University of Rochester in Rochester, NY to test the safety of sulforaphane, a drug that boosts the activity of antioxidant genes in the body to combat oxidative stress. Oxidative stress has been shown experimentally to play a role in kidney disease. This trial will test three different doses. As it is a Phase I/II trial, researchers are primarily looking for tolerability and appropriate dosage. They are looking for participants with CKD stages 3 and 4, an eGFR between 20 and 60 ml/min/m2/year, a decline in eGFR of greater than 3 ml/min/m2/year in the previous 12 months, and blood pressure less than 140/90 mm Hg. For more information, determine eligibility, or enroll, check here.

2. Trial to Evaluate and Assess the Effect of Comprehensive Pre-ESKD Education on Home Dialysis Use in Veterans (TEACH-VET)

This trial will evaluate the effect of pre-end stage kidney disease (ESKD) education on home dialysis use, including confidence on dialysis choice, satisfaction, and quality of life. The education involves three sessions conducted either in-person in Gainesville, FL, or via telemedicine. The study is looking for veterans with advanced stage 4 or 5 CKD that are not currently on dialysis to participate in this trial.

For more information, determine eligibility, or enroll, check here.

3. Combination of Novel Therapies for CKD Comorbid Depression (CONCORD)

This Phase 2 trial is evaluating the efficacy of Wellbutrin in combination with behavioral activation therapy to treat depression in those with CKD. This study takes place in both Seattle, WA and Dallas, TX. They are recruiting men and women with CKD stages 3b, 4, or non-dialysis stage 5, with an eGFR of less than 45 mL/min/1.73 m2 for a period of at least 3 months to participate who have major depressive disorder (MDD). Consult with your physician regarding MDD diagnosis. For more information, determine eligibility, or enroll, check here.

4. Effects of Resistant Starch Diet on the Gut Microbiome in Chronic Kidney Disease

This study will evaluate the effect of resistant starch in the diet on the gut microbiomes of both adults and children with stage 3 CKD. The researchers are looking to understand if changing the CKD diet may improve the clinical management of CKD. The study takes place at the University of Arkansas in Little Rock. They are looking to recruit 30 adults and 30 children for this trial.

For more information, determine eligibility, or enroll, check here.

5. Management of Cardiovascular Disease in Kidney Disease (MaCK) Study

This Phase 2 trial investigates the efficacy of Hydroxychloroquine (HCQ) in managing cardiovascular disease in Veterans with CKD Stages 3b or 4. While cardiovascular disease (CVD) is common in those with CKD, the combination of CVD and CKD is disproportionately represented in Veterans. This trial takes place in Gainesville, FL.

For more information, determine eligibility, or enroll, check here.

6. Trial of Pirfenidone to Prevent Progression in Chronic Kidney Disease (TOP-CKD)

TOP-CKD is a Phase 2 trial investigating the drug Pirfenidone to improve kidney fibrosis and function in patients with CKD. The study taking place in both San Francisco and San Diego, CA, is enrolling participants aged 21 years or older with eGFR greater than 20 ml/min/1.73m2.

For more information, determine eligibility, or enroll, check here.

7. Neurovascular Transduction During Exercise in Chronic Kidney Disease (NeurovEx)

People with CKD often have poor exercise capacity and increased blood pressure during exercise. To address this, a Phase 2 clinical trial is comparing exercise interventions, 6R-BH4 (Kuvan) treatment, and Histidine and beta-alanine supplements. This study, which takes place at three institutions in Georgia, is enrolling participants that do not exercise regularly and have Stage 3 or 4 CKD as well as healthy controls.

For more information, determine eligibility, or enroll, check here.


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