As a kidney research professional, I’m passionate about the progress that can be made with new and ongoing research and clinical trials, as well as discouraged by the lack of data related to kidney disease, especially chronic kidney disease.
During my hands-on epidemiological field work in the United States and abroad, I was able to see first-hand the disproportionate representation of certain types of patients in clinical trials. For example, while many studies reach and represent a broad range of people living with end stage kidney disease, people living with chronic kidney disease (CKD), continue to be underrepresented. A high percentage of CKD patients are at risk for developing cardiovascular morbidity and other related illnesses. It’s vitally important that this population is reached and represented in clinical trials, studies, and new therapies to better understand the connections between kidney disease and other diseases and disorders.
Nearly 900 million people worldwide are affected by chronic kidney disease, yet people with CKD are often excluded from clinical trials, and many remain unaware of the extant trials and their potential benefit. Regulatory authorities often exclude people with CKD from new and experimental therapies and courses. Other courses for which these individuals would be eligible often fail to reach those who need them most, both from lack of outreach and from limited disease management. Including this underrepresented population in trials and therapies would not only help those living with chronic kidney disease, but also the advancement of kidney care by providing effective and inclusive research.
Clinical trials often reach those patients for whom similar medical treatment would be prohibitively costly. These patients, once reached, have an opportunity to benefit from participating in trials, and the exposure to networks of other emerging innovations. Including these patients in clinical trials aids in continuing research that impacts all kidney disease patients, even those not yet diagnosed. Many of these trials deal not only with treatment, but with prevention. Access to patients with chronic kidney disease is vital in using studies and clinical trials to help shape the future of kidney care for all kidney disease patients.
Researchers are finding new ways to reach patients with chronic kidney disease to enroll in their studies: making participation more convenient by providing for transit; offering modest stipends to qualified patients; increasing outreach among underrepresented populations, including seniors and the disabled; scheduling treatments and courses more flexibly, including using remote appointments and online scheduling. But the most impactful action will take place at the person-to-person level. This means making the potential benefits of new therapies and trials clear, and working to retain study participants for long-term examinations of their progress. And while not every trial will directly benefit every patient with chronic kidney disease, many of these trials will have some impact on them, either by mitigating medication costs, or by indirectly subsidizing their care and treatment.
The number of individuals with
chronic kidney disease continues to grow, and many remain at risk of falling
through the research cracks. Therapies that may be beneficial, medications that
may be impactful, and treatments that could help extend lives remain unproven
due in part to a lack of participants. Patients fighting off chronic kidney
disease – as well as researchers like me – are doing as much as they can.
But collaboration can do a great deal more. The patients are out there, and the
trials, research, and new therapies are out there as well. I believe that
working together to extend the potential benefits of chronic kidney disease
studies is not only urgent, it’s a responsibility.
 World Health Organization: https://www.who.int/bulletin/volumes/96/6/17-206441/en/
 National Institutes of Health: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5131730/
 National Institute of Diabetes and Digestive and Kidney Diseases: https://www.niddk.nih.gov/health-information/health-statistics/kidney-disease
 National Institutes of Health: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5996218/
 US National Library of Medicine: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2950017/