Funding from the National Cancer Institute will help optimize patient engagement in research while studying osteosarcoma and leiomyosarcoma
The Broad Institute of MIT and Harvard, Dana-Farber Cancer Institute, and Count Me In, a non-profit research initiative that conducts patient-partnered studies of cancer, have been awarded a new $16 million grant from the National Cancer Institute, to accelerate research in two rare forms of cancer. The funding will support research projects in leiomyosarcoma and osteosarcoma, two cancers which have seen few recent therapeutic advances, while simultaneously yielding new information about the best ways to engage with patients traditionally underrepresented in cancer research. The goal of these projects is 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.
“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.
This new grant from the National Cancer Institute, part of the Cancer Moonshot program, 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 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.
“As the success of the Count Me In projects has already demonstrated, patients are eager partners in the efforts to accelerate cancer research,” said Laurie H. Glimcher, president & CEO of Dana-Farber Cancer Institute. “This significant support from the NCI will allow patients with two rare forms of cancer to directly participate in research, while also helping investigators unlock the potential of this shared data in order to drive new discoveries.”
“Over the last several years, Count Me In has partnered directly with thousands of patients to generate and share quality genetic and clinical data in six different cancer types,” said Nikhil Wagle, director of Count Me In, a medical oncologist and cancer researcher at Dana-Farber and the Broad, and principal investigator on the new award. “With this generous award, we will now be able to further expand our efforts, as well as more rigorously examine how we engage with patients, allowing us to better reach those least likely to participate in clinical research.”
The new 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 sorely needed.
Through the projects, Count Me In will engage adult and pediatric participants with osteosarcoma or leiomyosarcoma to generate a rich database and share it with the scientific and medical communities.
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 CMI is partnering with in an evidence-based way, which will ensure that new insights are relevant to and benefit as many patients as possible.
“This support will help us understand how to better engage adolescents and young adults, groups who are traditionally under-represented, in cancer research,” said Katie Janeway, director of clinical genomics at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center and co-principal investigator of the award. “The database of clinical, genomic, molecular, and patient-reported data from osteosarcoma and leiomyosarcoma patients that will be generated from this project is a much-needed resource for the research community.”
The Count Me In team plans to establish workflows for returning to participants data on their individual germline (inherited) DNA and somatic (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.
About Count Me In
Count Me In is a 501(c)3 nonprofit research initiative on a mission to make every patient’s experience count in the effort to understand and overcome cancer. Founded in 2018 by Emerson Collective and Broad Institute of MIT and Harvard, and Dana-Farber Cancer Institute, Count Me In engages and empowers patients to participate in cancer research by donating medical records, genomic data and tumor samples for study. To learn more, visit JoinCountMeIn.org.
Facebook post from Theresa Beech
This is a huge deal.
The Count-Me-In Osteosarcoma has received half of the $16M grant from the National Cancer Institute (NCI) to do even more for Osteosarcoma genomics, including germline and the deceased patients’ genomics. I gave input to this grant which was lead by Dr. Corrie Painter at the Broad Institute and The Count-Me-In Project. Dr. Katie Janeway of Dana Farber is the lead scientific advisor. The Osteosarcoma Collaborative and Because of Danielwrote letter of support for the grant (I think other organizations may have as well, but I don’t know for sure). The deceased patient initiative is my idea along with the scientific rationale behing it.
This is the largest osteosarcoma genomics grant I have ever heard of. The data and output from this are already changing our understanding of osteosarcoma and hopefully one day will provide the rationale behind new treatments and better outcomes for this disease.
Thank you to all of you who have signed up and said “Count Me In.” Together we are changing the understanding of this awful disease.