RARE Daily

NCI Awards $16 Million Grant to Advance Research of Two Rare Cancers

February 18, 2021

Rare Daily Staff

The National Cancer Institute has awarded the Dana-Farber Cancer Institute, The Broad Institute of MIT and Harvard, and the non-profit research initiative Count Me In a $16 million grant to accelerate research in two rare forms of cancer.

The funding will support research projects in leiomyosarcoma and osteosarcoma, two cancers that have seen few recent therapeutic advances. The projects are designed to accelerate discoveries that can drive new insights into the genomic roots of rare cancer, discover mechanisms of resistance to therapies, and uncover potential new treatment strategies.

At the same time the effort is expected to yield new information about the best ways to engage with patients traditionally underrepresented in cancer research. The organization said the grant represents a significant federal investment in Count Me In’s patient-partnered research model enabling patients with cancer from across the United States and Canada to easily donate their tissue, blood, and saliva samples, and share their medical information.

Researchers from the Broad and Dana-Farber will use this information to generate databases of clinical, genomic, molecular, and patient-reported data. The data collected and generated is shared widely with the scientific community to help drive new discoveries and therapies.

“This new investment will enable Count Me In scientists and participants to work together like never before, spurring new insights into the roots of illnesses that sorely need new treatment options,” said Todd Golub, director of the Broad Institute.

The grant will support Count Me In’s existing Osteosarcoma Project, which was launched in February 2020. Osteosarcoma is a rare bone cancer that is newly diagnosed in approximately 1,000 people each year in the United States, and primarily impacts adolescents and young adults ages 10 to 30. Therapy for this disease has not substantially progressed over the past 40 years, and standard treatments have toxic side effects for patients. The Osteosarcoma Project partners with patients and parents or guardians through social media and advocacy groups to generate data that represents the spectrum of people affected by this disease.

This grant will also support the launch of a new Count Me In effort to partner with patients with leiomyosarcoma, a smooth muscle soft tissue sarcoma that can arise from almost any site in the body. Roughly 2,000 new cases of leiomyosarcoma are diagnosed each year in the United States, and for many patients, the disease has already spread to other organs when they are first diagnosed. Current therapies have limited clinical benefit and new treatment options are needed.

The research team will also study the best ways to engage with patients in cancer research, including those who are often underrepresented in these studies such as rural and minority participants and those across different literacy levels, ages, and developmental stages. Lessons learned will help improve future patient-partnered studies and increase the diversity of the patients Count Me In is partnering with in an evidence-based way, which will ensure that new insights are relevant to and benefit as many patients as possible.

Count Me In said it plans to establish workflows for returning to participants data on their individual inherited DNA and tumor-related mutations, although that capability will not be in place when the projects launch. Past Count Me In projects have returned aggregated data to participants, so this is an important step in building a new capability to enable individual return of results in the future.

Photo: Todd Golub, director of the Broad Institute

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