Better Together: One Year of the tRCC Project
This is a guest post by the tRCC Project, a collaborative research project of the Broad Institute, Dana-Farber Cancer Institute, and Boston Children’s Hospital.
*This post contains preliminary data based on current tRCC Project participants; it is not final or comprehensive.
At the Translocation Renal Cell Carcinoma (tRCC) Project, we are driven by three primary goals:
- defining the molecular landscape of tRCC
- exploring differences between pediatric and adult forms of tRCC
- creating the first-ever tRCC dataset that includes patient-reported data, abstracted clinical data, and genomic sequencing data.
Led by Srinivas Viswanathan, MD, PhD at Dana-Farber Cancer Institute, and Elizabeth Mullen, MD, FAAP, Program Leader, Renal/Liver Tumors at Dana-Farber Cancer Institute and Boston Children’s Hospital, we strive to unlock the mysteries of this rare kidney cancer through the power of patient-partnered research. We are honored to have incredible advocacy partners like the Kidney Cancer Association (KCA), inspiring us. We also want to highlight our mutual partner, Joey’s Wings Foundation. Their dedication to pediatric and rare kidney cancer research encouraged the launch of this project,and we are grateful for their critical support.
Thank You to Our Participants
Because tRCC is a rare subtype of renal cell carcinoma, it has been historically difficult for researchers to gather a large enough group of patients to find meaningful patterns.
We want to express our sincere gratitude to our current cohort of 38 individuals who have joined this project over the last year. Your willingness to share your samples and medical history is driving this project. As of early 2026, here is what our preliminary data shows us:
- A Younger Patient Population: The average age at diagnosis is 31, with 24.2% of participants diagnosed under 18
- Geographic Reach: Our 38 participants come from 19 US states and have received treatment from at least 43 institutions, proving that the tRCC community is widespread and ready for connection
- Gender Distribution: In our current cohort, there are 24 female and 9 male participants.
The Journey to Diagnosis
The data we’re collecting also sheds light on the “diagnostic odyssey” that so many in the tRCC community endure. On average, participants visit nearly four clinicians before receiving a tRCC diagnosis. This highlights another motivation behind our work: to help the medical community recognize tRCC sooner and reduce the burden on patients.
- Common Symptoms: Many sought care for abdominal pain, back pain, or blood in their urine, though 7 participants reported having no symptoms at all.
- First Contact: The journey often began at a primary care office (40.6%) or an Emergency Department (28.1%).
Treatment: Surgery remains the most common treatment (30 individuals), often followed by radiation or various forms of immunotherapy and targeted therapy.
Turning Samples into Discoveries
We know that sharing medical information is deeply personal. Once shared, your data is de-identified—meaning your name and identifying details are removed—to build a comprehensive, secure dataset. This dataset will become part of a global resource, available to researchers around the world.
By opening up this data, we ensure that the global scientific community can collaborate to find better insights, more accurate diagnostics, and more effective treatments for tRCC. We want to create an opportunity to discover patterns that may have been previously missed due to smaller, isolated studies. To date, the project has received:
- 26 saliva samples
- 24 blood samples
- 12 tissue samples
- 25 participants’ medical records
Join Us
The value of a dataset like this expands with every new participant. More data means better insights, that could lead to better care for everyone.
The tRCC Project is still actively enrolling. If you or a family member has a tRCC diagnosis and lives in the U.S. or Canada, please consider joining us. For more information and to enroll, visit trccproject.org.