November 27, 2019

Around 37 million people (15% of the population) in the U.S. have chronic kidney disease (CKD) and around 90% of these people don’t even know they have it. With the aging population and increasing prevalence of risk factors such as diabetes, high blood pressure, and obesity, these numbers are increasing. How have we fallen so far behind in kidney disease prevention and treatment?

Beneath the curve

A historic look at the number of randomized clinical trials (RCT) over the past decades, sorted by specialty, tells the story.

Reprinted with permission from: Chatzimanouil MKT, Wilkens L, Anders HJ. Quantity and reporting quality of kidney research. J Am Soc Nephrol 2019; 30(1):13-22.

Nephrology lags behind every other major disease area in the annual number of RCTs since records have been kept — more than 50 years. It’s literally at the bottom of the curve, whereas neurology (e.g., Alzheimer’s), cardiovascular disease, oncology, and infectious disease (e.g., HIV) are at the top — and the gap is increasing.

Yet there is a large, unmet need in kidney disease. A 2016 systematic review and meta-analysis suggests that the global prevalence of CKD is 11-13% — around one billion people — largely Stage 3. Many of these patients have no option but to watch their renal function erode until they go on dialysis or become transplant candidates. In the U.S., our aging population and growing rates of diabetes and obesity all but guarantee that the prevalence of kidney disease will continue to rise.

And every year, more people are diagnosed with kidney disease than with cancer. Yet there is a huge contrast between the amount of effort that goes into oncology research compared with nephrology. While there are certainly differences in funding and differences in the number of clinical trials that go on in each, less obvious factors also demand our attention.

Differences in tone and messaging

The distinct tone and messaging we use in the worlds of oncology and nephrology reflect and shape public and caregiver expectations. In oncology, it’s a fight: The “war on cancer” or someone is “battling cancer.” In nephrology, we talk about “living with kidney disease.” It’s a different attitude, a different approach. If, instead, we speak of a war on kidney disease, we might see more investments and more clinical trial activity in kidney disease.

Not knowing what’s on offer

Patients have variable resources when it comes to finding out about clinical studies. If you’re a cancer patient, your oncologist will routinely have a conversation with you about participating in a clinical research trial. This is not the case in nephrology. In a recent survey, while 45% of melanoma patients and 58% of lung cancer patients learned of relevant clinical trial opportunities from their physicians, only 22% of nephrology patients did.

The same survey also showed that kidney disease patients want to be made aware of clinical studies and once they are made aware, they tend to participate in those studies. Furthermore, they want that information to come from their most trusted source. Rather than reading about it, seeing it on the news, or hearing about it from a neighbor down the street, they want to hear about it from their nephrologist.

Physician awareness is key

Clinical research studies in nephrology are available. There may be fewer than in oncology, but they exist and they are meaningful. Nephrologists should become more aware of the opportunities they have around the world to participate in clinical trials. They will then be able to engage their patient populations, educate them, and make them more aware of the possibilities for participating in these studies.

Potential benefits for patients include the possibility of receiving treatments otherwise unavailable, the extra attention and increased engagement associated with being in a study, and the satisfaction of “giving back.”

Partnership with Frenova can help

Nephrology trials benefit physicians and sponsors, too. Adding clinical research to a patient practice carries potential economic and clinical advantages. Being part of a network of managed sites like Frenova’s makes it easy for physicians to keep abreast of current research opportunities. Through our deep understanding of renal patients and their needs — and our many renal-specific management techniques and resources — we make the clinical trial process more efficient and effective for nephrologists and sponsors alike, whether they are executing a renal study or any other study that includes patients with kidney disease.

By breaking down the barriers to clinical trial participation for investigators, sponsors, and patients with kidney disease, and by raising awareness, Frenova is making greatly needed kidney research much more feasible. 

Visit the Frenova website to read the full Frenova section on chronic kidney disease as a public health crisis in the Fresenius 2019 Global Annual Medical Report.

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