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Count Me In and the Fight Against Translocation Renal Cell Carcinoma

In a significant stride towards understanding and treating translocation renal cell carcinoma (tRCC), Count Me In has announced the launch of a novel patient-partnered research initiative. This project aims to engage tRCC patients directly, allowing them to share their unique health data and personal experiences to drive critical research forward.

Understanding Translocation Renal Cell Carcinoma

Translocation renal cell carcinoma is a rare and aggressive form of kidney cancer characterized by specific genetic alterations, particularly chromosomal translocations—events where portions of chromosomes are exchanged or rearranged. While this cancer type can affect individuals across all ages, it predominantly emerges in children and young adults. Due to its rarity, research efforts have historically lagged, resulting in limited treatment options and unresolved queries for patients and families affected by this daunting disease.

The aspirations of the tRCC project are to dismantle these barriers by forming a collaborative network that includes patients, caregivers, and advocates. Through these partnerships, there is an emphasis on gathering in-depth knowledge about this condition to discover potential therapeutic strategies.

How It Works

Participants in the tRCC project can contribute their medical histories, personal anecdotes, and biological samples using Count Me In’s secure online platform, ensuring their privacy through de-identified data before being made available to researchers. With its affiliation to the Broad Institute, the initiative will leverage advanced genomic sequencing and innovative research tools at the Broad Clinical Labs, which are crucial for in-depth exploration of tRCC at a molecular level, with the goal of unveiling significant insights.

Diane Diehl, the Director of Scientific Operations for Count Me In, expresses a clear mission: “We aim to redefine the study of rare cancers like tRCC by giving every patient a voice in the research process. Working closely with the tRCC community, medical professionals, and researchers, we strive to reveal critical insights that may lead to improved treatments and care.”

Challenges Ahead

Dr. Srinivas Viswanathan from the Dana-Farber Cancer Institute explains the significant challenges that tRCC presents: “Translocation renal cell carcinoma is not only rare but also aggressive, presenting many treatment hurdles. Partnering with Count Me In places us in a unique position to engage with patients and families affected by this under-explored cancer. This collaboration holds the promise of extending our understanding and developing new, more effective treatment pathways.”

The commitment of Count Me In to its patient-driven research model has the potential to transform how the medical community addresses rare cancers such as tRCC. “The increased accessibility to diverse patient data, including genetic and clinical insights, is indispensable for gaining a comprehensive understanding of tRCC,” articulated Elizabeth Mullen, MD, a Program Leader at Dana-Farber/Boston Children's Blood Disorders and Cancer Center. She further emphasizes that this expansive patient data aids in deciphering tRCC biology, which in turn allows for the customization of treatments and opens doors to new therapeutic explorations.

Joining the Initiative

The tRCC project is now open for participation from individuals diagnosed with tRCC throughout the United States and Canada. Interested patients and caregivers are encouraged to visit tRCCProject.org to learn more and sign up for this groundbreaking research initiative.

About Count Me In

Count Me In represents a series of direct-to-patient research projects, spearheaded by the Broad Institute of MIT and Harvard, enabling patients to take an active role in transforming research and discovery. By sharing their medical information, experiences, and biological samples directly, patients become pivotal contributors to advancing knowledge and breakthroughs in treatment and care.

For further inquiries, media communications can be directed to Melissa Chiumiento, the Media Communications Manager at Count Me In.