Urologic conditions affect people of all ages, result in significant health care expenditures, and may lead to significant disability and impact to quality of life.¹ Noncancerous and cancerous conditions of the bladder, prostate, and kidney are of focus for the AUA, affiliates, and the patient advocate groups in their united work together. Of note, this scope is rooted in the prevalence in the population at large. For example, bladder conditions such as urinary incontinence are experienced by more than 50 million people worldwide²; in the US, kidney cancer is ranked as the sixth and ninth most prevalent overall for men and women, respectively,³ and prostate cancer as the second most prevalent and lethal for men.⁴

While these are unique urological conditions, one theme is clear across the many patient advocate groups in this space—as a whole, we are proactive, involved, and committed to supporting the pursuit of improved treatment options. As volunteer patient advocates ourselves—Tom Hulsey is a survivor of prostate cancer and Jacqueline Zarro lives with kidney cancer and the rare condition von Hippel–Lindau disease—we have been buoyed by efforts to incorporate and value the patient voice in the medical field across myriad areas, including research.

The most significant research funding source that wholly incorporates patient and caregiver involvement is the Department of Defense’s Congressionally Directed Medical Research Programs (CDMRP). These programs focus on high-risk, high-reward investigations for the purpose of, according to the CDMRP website, “Transforming Health Care Through Innovative and Impactful Research.” For more than 30 years, the CDMRP has served as a stellar example of patient advocacy and the potential impact of organizing and appealing to Congress, as well as meaningfully incorporating the patient perspective into the research review process.

Of note, the CDMRP is a critical funding stream for urologic research; currently, there are dedicated CDMRP programs for the Prostate Cancer Research Program and kidney cancer. Bladder cancer receives funding under the CDMRP’s Peer Reviewed Cancer Research Program, and von Hippel–Lindau disease will be funded through the CDMRP’s Peer Reviewed Medical Research Program this year.

CDMRP provides a case study on how patients can organize and have a meaningful impact:

• History/background. The first CDMRP program was established for breast cancer research in 1992 as the result of efforts by the breast cancer advocacy community. Other patient advocacy communities have since similarly organized, and the CDMRP has grown to be an umbrella research program comprising roughly 35+ disease-/condition-specific medical research programs, providing over $16.3 billion in funding through fiscal year 2022.
• Patient engagement. A hallmark of CDMRP is the incorporation of the patient perspective (consumer reviewer) throughout the program cycle. This provides a direct avenue for patients and those closest to them to directly engage in the research process.
• Type of research funded. CDMRP programs tend to support high-risk, high-reward translational research that offers the best hope for meaningfully benefiting today’s patients. The CDMRP fills research gaps that other agencies, such as the NIH, may not fund. All programs managed by the CDMRP share the common goal of advancing paradigm-shifting research that will lead to cures or improvements in patient care.

The AUA’s advocate affiliates are unified in championing continued support of the CDMRP research funding. Through respective legislative efforts, we advocate for annual CDMRP funding. In turn, many from our extended community of patients, caregivers, researchers, and medical providers volunteer to participate in the review process to jointly move forward research that is high risk, high reward.

Specifically, CDMRP consumer reviewers include survivors, patients, and caretakers affected by and at risk for certain conditions, diseases, or injuries who are tasked to read and evaluate research study applications for relevance to the consumer community’s needs and concerns, and actively participate in peer review panel discussions. Consumer reviewers participate as full members of the review panel, with full voting member status.

Many members of the AUA and quite a number of advocate groups already champion the CDMRP through legislative advocacy, through serving on panel reviews, or by submitting research proposals. Please consider how we can each support this critical funding through the following ways:

• Clinicians. Investigate opportunities for joining CDMRP programmatic review panels to set goals and determine funding mechanisms/allocations by subarea.
• Patient groups. Be sure you are actively circulating CDMRP consumer review opportunities to build the bench for reviews and ensure diversity of patient backgrounds and views are represented.
• Researchers. Sign up for CDMRP newsletters to stay abreast of funding opportunities. Of note, opportunities are not limited to US-based researchers. In the last 3 years, CDMRP has funded research in 23 countries outside the US.

Thank you to everyone who already supports the CDMRP program and to those who will further message the many ways to engage.