Pushing for Clinical Trials and Advocating for Patients in Rare Kidney Cancers

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“As a community, if we’re looking to help enroll and advocate for patients with rare [kidney cancers], we need to be aware of what is out there,” said A. Ari Hakimi, MD.

There are a lot of struggles in advancing the care of rare kidney cancer subtypes, though leading experts search for strategies to bring the best care possible to patients. At the 2025 Kidney Cancer Research Summit, a session titled “Clinical Trial Design and Execution” featured presentations for doctors that sought to overcome that problem.

A. Ari Hakimi, MD, a urologic surgeon at Memorial Sloan Kettering Cancer Center and one of the moderators of that panel, spoke with CancerNetwork® at the conference and discussed some of the most intriguing takeaways. Of note, he mentioned an idea brought up by W. Kimryn Rathmell, MD, PhD, chief executive officer of The Ohio State University Comprehensive Cancer Center, to conduct multicenter trials that are linked by a principal investigator who meets with patients remotely.

Doctors also need to remain aware of the kidney cancer landscape, according to Hakimi. Staying up to date on social media, as well as on company websites, can keep doctors current and help them advocate for patients as much as possible.

He concluded by emphasizing that these are challenges that can be overcome, but that they need to keep pushing for advancements in rare kidney cancers.

Transcript:

CancerNetwork: What were the most important themes from the Clinical Trial Design and Execution session?

That session talked about the challenges of doing rare cancer [trials], a lot. There was a debate between doing larger phase 3 trials, even though it takes longer to accrue, vs doing smaller trials that may be underpowered. We heard the pros and cons of both of those, and then Dr Rathmell brought up some of these interesting strategies of having a trial that’s conducted across many centers but is done with a [principal investigator] that may be connecting remotely with the patients. That was a cool strategy, and there’s some logistics about that, but that is a good strategy that we could try to employ in cancer.

What should investigators keep in mind to optimally organize and conduct clinical trials?

As a community, if we’re looking to help enroll and advocate for patients with rare diseases, we need to be aware of what is out there. Whether that’s on social media or whether it’s going to the Kidney Cancer Research Symposium website or other foundations, that is a way that we have to advocate for our patients. Just being part of a bigger community and looking to enroll patients with rare events and rare diseases, into these bigger things [can help] because if we don’t do it, no one else will.

What do you hope people take away from that session?

There are definitely ways that we can overcome these challenges. We have to prioritize a couple of more promising drugs and targets that may be linked to the biology, but there is a path forward to conducting studies and trials in rare cancers.

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