Each person who has joined 23andMe’s Sarcoma research community has their own reasons for participating, but they all share the same hopes that we have — to find the causes for sarcoma and new treatments for this rare cancer.
Earlier this month, 23andMe took an important step in that direction when we topped our goal of enrolling 1,000 people in our Sarcoma research community. We’re ecstatic that this group is not only one of the world’s largest cohorts of people with the disease, it is also at a size that lends power to the research.
It wouldn’t have been possible without people like Tracy Ceperley of British Columbia.
“My hopes are to find the (the genetic mutations) responsible for sarcoma,” said Tracy. “And maybe find a cure for the cancer before it happens (to others) or at least help fight this rare and harsh cancer.”
Sarcomas are an uncommon and complex group of cancers affecting the bone, cartilage, muscle and other soft connective tissue in the body. About 14,000 people a year in the United States are diagnosed with sarcomas, but they amount to a very small fraction of the 1.4 million cancers diagnosed in the US each year. Individually sarcomas are very different from one another. All this combines to complicate research and drug development for the disease.
That’s where our Sarcoma research community comes in. In two years we’ve created a research cohort that gives sarcoma patients an opportunity to participate in a study from anywhere in the world with web access. It’s as easy as spitting in a tube, mailing it in, and answering questions online, all from the comfort of home. We aim to leverage our online tools and novel research platform to make breakthroughs in genetic research for this rare disease.
“We hope that this project yields new data, coupled with information from similar efforts elsewhere, that can be used for the benefit of people who need treatment for these rare cancers,” said Dr. Robert Maki, a sarcoma medical oncologist and one of the unpaid advisors on our independent Sarcoma Scientific Advisory Committee.
Along with Dr. Maki, we are fortunate that our advisory committee also includes George Demetri, MD, Judy Garber, MD, MPH, and Mark Robson, MD, who have all expressed similar hopes for the research.
“In research in general the quality of the community is important,” Dr. Demetri told us recently. “The engagement of the community is important. It’s not just the number. But it is incredibly helpful to be able to have dialogue back and forth between the patients, doctors and researchers. Patients also want to be able to reach out to other patients. . . Having patients participate as part of the research will teach us a lot. It’s to the patients advantage to help us hone the data we’re collecting and to have the patients voice in there.”
We expect the next few years to be important in helping oncologists determine genetic and non-genetic risk factors that predispose people to developing sarcomas. As that research goes on our community members can explore other aspects of their DNA using 23andMe’s tools for ancestry, health and traits.
This is an engaged and active community; something researchers will tell you is vital to success. Many members participate in our discussion groups and over 80 percent have completed important surveys. Researchers and patients both benefit from more open communication, not just because it offers an opportunity to share important medical information, but because it puts a human face on both sides of the research.
Last summer, we had a chance to meet directly with some of members of our Sarcoma community. For our scientists those exchanges helped bring home the importance of their work. We’re hopeful for results, but in the meantime, as community member Tracy Ceperley says to others diagnosed with sarcoma:
“Stay strong and courageous, each day is a gift.”