Research in nephrology has been on the rise over the past 5 years and data show that the future is bright for both innovators and people living with kidney diseases. This glimmer of hope was displayed throughout Kidney Week, during which both people living with kidney diseases and kidney health professionals came together to learn and discuss the current and future state of clinical research.
During a session titled Clinical Research in Nephrology: Trials, Trends and Tools, Uptal Patel, Senior Director at Gilead Sciences and nephrologist by training, reviewed a dataset of clinical trials by subspecialty between 1966 and 2002 that displayed nephrology with the lowest proportion of all subspecialties. However, recent data show an increase in quality and quantity of trials in nephrology, including an increase in trials for devices, behavioral interventions, and rare kidney diseases.
As Jamie Dwyer, Director of Vanderbilt University’s Nephrology Clinical Trials Center, stated to the audience of kidney health professionals, there needs to be a shift in the culture of nephrology to focus on research readiness. More research being conducted in the field will assist with shifting to upstream and personalized care for patients living with kidney diseases.
The following are the four areas to consider when implementing a research-ready culture:
Knowledge – Everyone needs to know the value of research and how to message its importance. Knowing the protocol is key.
Processes – Make processes sensible and clear. Intuitive processes will always succeed.
Communication – Ensure that communication is clear. Follow-up communication with everyone on the care team helps ensure the subject continues participation on the drug/study.
Engagement – Approach and engage with your patients about new studies they can participate in.
Mary Baliker, a healthcare consultant and transplant recipient, noted that it is crucial to consider the patient perspective in any clinical study. It is important to those who are participating in the study that the treatment is significant to them, the study duration and design are feasible, and the outcomes are relevant. By engaging patients early for feedback on study design and communicating data back to patients after studies are complete, this will increase the likelihood of positive experiences associated with participating in clinical studies and continued participation, Baliker said.
Kidney patient and healthcare organizations are developing programs to support patients and families as well as clinicians, researchers, and the healthcare team as they consider and embrace a culture of research readiness. NephCure Kidney International (NKI) CEO Josh Tarnoff outlined the new NKI program called Kidney Health Gateway. Visit www.kidneyhealthgateway.com to sign up for alerts and information on clinical trials for nephrotic syndrome.
The Kidney Health Initiative, ASN’s public-private partnership with the US Food and Drug Administration, and its member organizations have also been collaborating to catalyze this change and uptake in clinical research. The perspectives outlined in this Kidney Week session reiterated the changes needed to bring promising therapies to people living with kidney diseases throughout the world. By engaging patients earlier in clinical trial design, embracing a research-ready culture, and implementing infrastructure for more efficient trials, the future of research in nephrology can shine even brighter.