On April 23, several of us from the PKD Foundation (PKDF) met with our colleagues from the National Institute of Diabetes Digestive and Kidney Diseases (NIDDK) in Bethesda, Maryland. NIDDK, part of the National Institutes of Health (NIH), conducts and supports research on many of the most common, costly, and chronic conditions. Building and maintaining partnerships like this is another way we can pool our efforts to benefit patients dealing with kidney-related issues. As part of our 2019 Advocacy plan, we’ve asked for $2.165 billion for the NIDDK’s fiscal year 2020 budget. This is a 6.7% increase from the fiscal year 2019 budget.

The meeting kicked off with an overview of PKDF’s goals for the year. This included sharing our strategic plan; talking about current funding for research; and providing an overview of the new ADPKD Patient Registry and other new projects the PKDF is working on.

Advocacy and research are two of the many things PKDF and NIDDK have in common. NIDDK provided great input that will help make the Patient Registry stronger and more beneficial for the patients who self-report on disease progression, doctor visits, medication, family history, and quality of life.

One of the most exciting discussions of the day centered around how we can work together to ensure the health of the PKD research pipeline. Historically, the PKDF has been committed to funding research grants. To help facilitate this process, the PKDF switched to an annual grant funding cycle. This cycle includes fellowships and our new Young Investigator Award.

NIDDK proposed the idea of including Junior Investigators in the pipeline. This is a way to draw in promising young scientists and keep them working in PKD research. Our talks also looked at the split between Ph.D. and M.D. researchers in PKD. We agreed it doesn’t serve our community well if we place too much emphasis on one over the other; it’s important to have a balance to allow for basic discovery and translational and clinical studies.

We also confirmed NIDDK’s commitment to the PKD centers remains unchanged. These PKD P-30 Core Centers encourage collaboration among investigators from relevant disciplines, and information and resources from the centers are made available to a broader research community. Investigations can include kidney diseases of hypertension and diabetes, immune- and non-immune-related mechanisms of kidney disease, nephrotoxins, and cell injury.

We’re grateful for the ability to continue these discussions with NIDDK and look forward to seeing what our next collaboration will be.

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