The Kidney Research National Dialogue: NIDDK’s New Model for Advancing Kidney Science

Until recently, NIH identified new investigational areas by gathering small groups of experts at face-to-face meetings scheduled months in advance. Besides the costs involved, this method limited discussion to a narrow topic among a few researchers. To improve this process, the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) developed a novel model to determine future research priorities through broad engagement with the kidney community. Currently in its second year, the Kidney Research National Dialogue (KRND) is a web-based forum where stakeholders interactively propose, evaluate, and select investigational objectives to improve understanding of renal biology and disease. The project entered its second phase with the recent publication of the first of 12 planned commentaries on research priorities selected by KRND participants.

Expanding the conversation

The first online strategic planning initiative launched by NIH, KRND was created to expand discussion of research priorities beyond the confines of NIDDK’s Bethesda campus.

“We are constantly looking to identify investigational opportunities, and it’s always been important to the NIDDK to engage as many people as possible,” said Chris Ketchum, PhD, deputy director of NIDDK’s Division of Kidney, Urologic, & Hematologic Diseases.

KRND is extremely important for the kidney research community, said ASN President Bruce Molitoris, MD, FASN: “Giving investigators around the country the opportunity to fully participate in KRND has led to a common vision of the future research needed to benefit patients with kidney disease.”

KRND addresses the need to improve outcomes by advancing knowledge—from the molecular basis of kidney disease to the characteristics predisposing patients to developing it, said Mark Okusa, MD, FASN. “The novel web-based system facilitates engagement of basic and clinical scientists, practitioners, and advocacy and professional groups in a dialogue that fosters new ideas and reinforces important recurring concepts,” Okusa said.

“The interactive platform was designed to overcome the expense and logistics of conventional strategic planning,” said Krystyna Rys-Sikora, PhD, program director and project leader of KRND.

Previously, NIDDK gathered experts for 1-day discussions of important areas for future research. “These centered on a few discussions and had clearly defined objectives,” said Molitoris. “However, they were limited to a select number of individuals, and there was a general tendency to believe their research interests were the most important areas to fund and advance.”

Limited productivity was also a concern. Even if 100 researchers met in person, breaking into smaller working groups can limit the ideas generated from each area and prevent cross-fertilization, said Ketchum. “If an expert seated in the CKD group had relevant information for the AKI group, they wouldn’t be able to share,” he added.

KRND’s instantaneous feedback could help shorten the research timeline. “If we can identify opportunities more quickly, distribute that information to the community faster, and get people thinking about the important research questions sooner, this could accelerate the pace of science,” said Rys-Sikora.

Molitoris agreed: “By quickly establishing investigative priorities, cooperative studies and large interactive team-science grants can be developed, allowing kidney disease research to rapidly advance.”

An open online forum

KRND’s online social network has expanded to 1600 members from the United States and abroad, representing the entire spectrum of the kidney community. In addition to proposing and weighing research objectives, KRND members rank ideas through an anonymous voting system.

Stakeholder interaction is critical because different groups see kidney disease from different points of view, said Okusa, who with Molitoris and colleagues coauthored KRND’s acute kidney injury (AKI) commentary.

“With AKI, patient advocates are interested in what the outcomes of these interactions mean to them,” Okusa said. “Basic scientists are interested in the biological mechanisms responsible for AKI. Clinical scientists are interested in employing these concepts in testable hypotheses that may lead to clinical trials. And advocacy groups can gain an understanding of the potential public health impact and lead efforts to improve public awareness and, potentially, funding and legislation that could impact care for patients with AKI.”

Participants saw advantages to NIDDK’s new approach. “KRND has opened up the spectrum of input tremendously,” said Molitoris.

“KRND’s interactive design permits a ‘real-time’ dialogue to refine and build consensus around important topics that would ordinarily take much longer,” said Okusa.

NIDDK’s experimental approach did have some disadvantages, including a lack of input from investigators outside the kidney research arena.

“These ideas were created within a narrow framework and may potentially not benefit from the large team science approaches and ideas emanating outside of nephrology,” said Molitoris. “Particularly, this may result in limiting the translational importance and abilities of the vision to be generated.” But he added that NIDDK has been very proactive and successful in planning small focused meetings bringing in outside experts to help nephrology think bigger, think differently, and create a new vision for future research.

A research blueprint

In 2011, working groups were formed in each of KRND’s 12 topic areas (see sidebar), responsible for compiling KRND objectives into commentaries—road maps for advancing kidney research. These commentaries—the first of which (AKI and diabetic nephropathy) were published in CJASN—will be disseminated to the global research community and to NIDDK for potential projects and funding (1).

The AKI commentary covered a wide range of topics—from identifying biomarkers and improving our understanding of pathophysiology to determining the optimal timing of dialysis initiation and cessation (2).

“Stakeholder consensus on KRND’s AKI commentary provides a blueprint for researchers by identifying the most important direction for AKI research,” said Okusa. “Although there are a number of areas to investigate in AKI, there are only limited resources and these need to be channeled to the most important areas.”

The development of patient registries was a key factor outlined in the diabetic nephropathy commentary (3). Identifying genetic and epigenetic risk factors for the disease, as well as developing new models for testing hypotheses, were among other key priorities for KRND participants.

A need for collaboration

Beyond individual research objectives, KRND participants identified a need for more collaboration. “Science is evolving to require a more collaborative approach and more diverse expertise,” said Ketchum. “We need more of those types of interactions, more multidisciplinary teams to tackle complex problems that face the nephrology community. NIDDK is paying close attention to the feedback, and going forward I’m hopeful that we’ll support those types of collaborative teams in the future.”

Molitoris agreed on the need for a collaborative approach. “Although NIH has always been a leader in discovery science, the current funding—especially for kidney research within NIDDK—limits the depth and breadth of research that can be undertaken,” he said. “It is essential for commercial entities that have the necessary funding to be involved in large clinical studies that could identify future therapies in the fight against kidney disease.”

One example Molitoris points to is the NIH Public-Private Partnership Program, adding that it needs to be advanced in NIDDK.

“This will promote interactions between nephrology researchers and industry to advance potential devices and therapies to the level of diagnosing and treating patients,” Molitoris said. “It is these types of interactions, which have been fostered by NIDDK in AKI meetings, that will benefit our patients the most.”

For more information about KRND visit http://www2.niddk.nih.gov/KUH/KUHHome/KRND.htm.

References

1. 

Rys-Sikora KE, et al. Kidney Research National Dialogue overview and commentary. Clin J Am Soc Nephrol 2013; doi: 10.2215/CJN.03590413.

2. 

Bonventre JV, et al. AKI: a path forward. Clin J Am Soc Nephrol 2013; doi: 10.2215/CJN.06040613.

3. 

Breyer MD, et al. Diabetic nephropathy: a national dialogue. Clin J Am Soc Nephrol 2013; doi: 10.2215/CJN.03640413.