What is the RINK?
Develop a multidisciplinary research consortium that will aim to build on the success of the Neonatal Kidney Collaborative and foster continued collaboration to improve outcomes in neonates with kidney disease. The RINK would be constructed based on the model of the PNRC (Pediatric Nephrology Research Consortium – Home (pnrconsortium.org )). In the PNRC, pediatric nephrologists meet periodically (twice per year) to brainstorm research ideas, present future studies, and review progress of on-going studies. The RINK will seek to emulate this model.
How does it work?
Based on this model, any active member in good standing is eligible to bring study concepts forward and to provide an opportunity for improvement, vetting, approval, and ultimately assist with study execution. Once a study is approved, the study team will present the study to the consortium and will solicit center participation. Each individual at a participating center that contributes at least one patient will receive authorship. This framework provides the flexibility for the consortium to perform studies ranging in size and scope from small investigator driven studies to clinical trials. This model will provide a framework, structure, and source of preliminary data for larger, funded studies and clinical trials. The PNRC now serves as an important component in the clinical trial framework within Pediatric Nephrology. This model does not provide statistical support for studies, and the principal investigators are expected to have this support to complete their studies. The RINK will serve to expand the NKC’s research portfolio to in include more investigator driven studies from a broader range of investigators.
What are the goals of the RINK?
We will provide the infrastructure to unite neonatologists, pediatric nephrologists, basic scientists, psychologists, patient families, adult nephrologists, and maternal fetal medicine physicians to address unmet research needs. We hope to encourage participation from nurse practitioners, pharmacists, and dieticians. Our goal is a diverse network of participants to develop and execute important research initiatives. We anticipate that as the RINK is successful, industry sponsors will look towards to RINK for research related to neonatal nephrology.
How will the RINK meet?
As we initiate the infrastructure of the RINK, we will hold virtual meetings to reduce cost. Once at full capacity, our goal will be three meetings per year with 1-2 in-person meeting per year (perhaps in conjunction with other meetings - such as pAKI, PAS (in the spring) or INNS as a pre or post meeting). We anticipate one day dedicated to facilitating collaboration and developing research ideas. See Table 1 for a proposed schedule of meetings.
How is the RINK organized?
We plan to develop several “working groups” to allow attendees to gravitate to groups with shared interests. During the first portion of the meeting, there would be a time where working groups can brainstorm ideas. We anticipate the first few meetings will be solely brain storming session. Once at full capacity, the brainstorming session will be followed by presentations of new studies that are seeking participants. Each meeting would conclude with presentations of completed work. The headers below describe the proposed workings of the RINK.
What are examples of potential working groups?
The purpose of the working groups is to serve as an opportunity for members to sit in a room together (in-person or virtually) to brainstorm research ideas and priorities. NKC members will be surveyed to identify priorities for working groups. While there will remain a large neonatal critical care nephrology focus, the working groups will seek to encompass the breadth of neonatal nephrology. Furthermore, new working groups can be suggested by members as interests/topics change.
Examples of potential working groups:
Fetal programming/ Fetal origins of CKD
Biomarkers/ risk stratification/ Early diagnostics
Epidemiology/ Observational Studies
Devices/ trials/ etc.
KST: CRRT, PD, ECMO
CAKUT/Genetic kidney diseases