The following was adapted from a January 25, 2011 press release from 23andMe. For more information, or to inquire about joining 23andMe’s Sarcoma community please go to http://www.23andme.com/sarcoma.
Leading Personal Genomics Company Engages the Worldwide Sarcoma Community for Research and Welcomes Leading Sarcoma Researchers and Clinicians as Advisors
23andMe’s sarcoma research efforts are well underway with collection of both phenotypic and genetic data from 500 individuals diagnosed with sarcoma already completed. The company is half way towards its goal of building a sarcoma research community of more than 1,000 individuals. 23andMe has also completed its Independent Sarcoma Scientific Advisory Committee with the appointment of leading researchers and clinicians, including Robert Maki, MD, PhD, George Demetri, MD, Judy Garber, MD, MPH, and Mark Robson, MD.
“Members of our independent, external Sarcoma Advisory Committee bring unsurpassed expertise of sarcoma and cancer genetics to our research efforts,” said Anne Wojcicki, 23andMe co-founder and CEO. “We are confident that together, we will meaningfully advance our current understanding of sarcomas.”
Sarcomas are a rare group of cancers that arise in connective tissues (such as muscle, fat, cartilage, tendons and blood vessels) or in bone. It is estimated that there are approximately 13,000 cases of Sarcoma seen annually in the United States. This is an extremely small number compared to the total of more than 1.4 million people who are diagnosed with cancer each year in the United States. The small number of cases seen, the diversity in the biology of each type of sarcoma, and other variables make identifying and understanding causes of Sarcomas particularly difficult.
23andMe’s Sarcoma research efforts first began in April 2010, inviting current and former sarcoma patients to participate by being genotyped and completing surveys about their disease and treatment response through the 23andMe web-based research platform, under approval from an Institutional Review Board (IRB). Participants receive access to the full 23andMe experience, including information about their genetic ancestry as well as access to all 184 health and trait reports at no charge.
As 23andMe collects information regarding these individuals’ experience, environment and response to different therapies, it is anticipated that 23andMe will be able to combine this information with genetic data to find patterns that will help researchers better understand the biology of sarcoma and the impact of various treatments.
"We have already enrolled more than 500 individuals diagnosed with Sarcoma, passing the 50-percent milestone in our goal of building a sarcoma community of at least 1,000 individuals. Through our research platform, we are gathering valuable information about sarcoma and response to treatment from these individuals,” explained Amy Kiefer, 23andMe, Survey Research Manager, PhD.
“This collaborative project is highly innovative, linking sophisticated genomic analyses with patient-reported outcomes and clinical data in people who have had sarcoma at some point in their lives. It is a novel, multidimensional approach to understanding these complex diseases with a mixture of science, medicine and social media,” said George Demetri, MD, Director of the Center for Sarcoma and Bone Oncology at Dana Farber Cancer Institute and Sarcoma Scientific Advisor to 23andMe. “The members of the Sarcoma Scientific Advisory Committee are enthusiastic to advise 23andme to ensure the highest quality data can be generated through this interactive process which brings together current sarcoma patients, long-term survivors of sarcomas, physicians and scientists of several different specialties.“
About 23andMe’s Sarcoma Scientific Advisory Committee
The committee is comprised of independent, external academic advisors, including:
Robert Maki, MD, PhD, is a renowned Sarcoma clinician and researcher. Already a 23andMe advisor, Dr. Maki recently joined The Mount Sinai Medical Center as the Chief of the Pediatric Hematology/Oncology Division, and is also Medical Director of the Sarcoma Cancer Program at The Tisch Cancer Institute.
George D. Demetri, MD, has led the development of several practice-changing clinical research trials for sarcoma and serves as the Director of the Center for Sarcoma and Bone Oncology at Dana Farber Cancer Institute, as well as Director of the Ludwig Center at Dana-Farber/Harvard Cancer Center, and Senior Vice President for Experimental Therapeutics at Dana-Farber Cancer Institute in Boston.
Judy E. Garber, MD, MPH, is the Director of the Center for Cancer Genetics and Prevention at Dana-Farber Cancer Institute and an associate professor of Medicine at Harvard Medical School.
Mark E. Robson, MD, is the Associate Attending Physician of the Clinical Genetics and Breast Cancer Medicine Services at Memorial Sloan-Kettering Cancer Center.
Leading Personal Genomics Company Engages the Worldwide Sarcoma Community for Research and Welcomes Leading Sarcoma Researchers and Clinicians as Advisors
23andMe’s sarcoma research efforts are well underway with collection of both phenotypic and genetic data from 500 individuals diagnosed with sarcoma already completed. The company is half way towards its goal of building a sarcoma research community of more than 1,000 individuals. 23andMe has also completed its Independent Sarcoma Scientific Advisory Committee with the appointment of leading researchers and clinicians, including Robert Maki, MD, PhD, George Demetri, MD, Judy Garber, MD, MPH, and Mark Robson, MD.
“Members of our independent, external Sarcoma Advisory Committee bring unsurpassed expertise of sarcoma and cancer genetics to our research efforts,” said Anne Wojcicki, 23andMe co-founder and CEO. “We are confident that together, we will meaningfully advance our current understanding of sarcomas.”
Sarcomas are a rare group of cancers that arise in connective tissues (such as muscle, fat, cartilage, tendons and blood vessels) or in bone. It is estimated that there are approximately 13,000 cases of Sarcoma seen annually in the United States. This is an extremely small number compared to the total of more than 1.4 million people who are diagnosed with cancer each year in the United States. The small number of cases seen, the diversity in the biology of each type of sarcoma, and other variables make identifying and understanding causes of Sarcomas particularly difficult.
23andMe’s Sarcoma research efforts first began in April 2010, inviting current and former sarcoma patients to participate by being genotyped and completing surveys about their disease and treatment response through the 23andMe web-based research platform, under approval from an Institutional Review Board (IRB). Participants receive access to the full 23andMe experience, including information about their genetic ancestry as well as access to all 184 health and trait reports at no charge.
As 23andMe collects information regarding these individuals’ experience, environment and response to different therapies, it is anticipated that 23andMe will be able to combine this information with genetic data to find patterns that will help researchers better understand the biology of sarcoma and the impact of various treatments.
"We have already enrolled more than 500 individuals diagnosed with Sarcoma, passing the 50-percent milestone in our goal of building a sarcoma community of at least 1,000 individuals. Through our research platform, we are gathering valuable information about sarcoma and response to treatment from these individuals,” explained Amy Kiefer, 23andMe, Survey Research Manager, PhD.
“This collaborative project is highly innovative, linking sophisticated genomic analyses with patient-reported outcomes and clinical data in people who have had sarcoma at some point in their lives. It is a novel, multidimensional approach to understanding these complex diseases with a mixture of science, medicine and social media,” said George Demetri, MD, Director of the Center for Sarcoma and Bone Oncology at Dana Farber Cancer Institute and Sarcoma Scientific Advisor to 23andMe. “The members of the Sarcoma Scientific Advisory Committee are enthusiastic to advise 23andme to ensure the highest quality data can be generated through this interactive process which brings together current sarcoma patients, long-term survivors of sarcomas, physicians and scientists of several different specialties.“
About 23andMe’s Sarcoma Scientific Advisory Committee
The committee is comprised of independent, external academic advisors, including:
Robert Maki, MD, PhD, is a renowned Sarcoma clinician and researcher. Already a 23andMe advisor, Dr. Maki recently joined The Mount Sinai Medical Center as the Chief of the Pediatric Hematology/Oncology Division, and is also Medical Director of the Sarcoma Cancer Program at The Tisch Cancer Institute.
George D. Demetri, MD, has led the development of several practice-changing clinical research trials for sarcoma and serves as the Director of the Center for Sarcoma and Bone Oncology at Dana Farber Cancer Institute, as well as Director of the Ludwig Center at Dana-Farber/Harvard Cancer Center, and Senior Vice President for Experimental Therapeutics at Dana-Farber Cancer Institute in Boston.
Judy E. Garber, MD, MPH, is the Director of the Center for Cancer Genetics and Prevention at Dana-Farber Cancer Institute and an associate professor of Medicine at Harvard Medical School.
Mark E. Robson, MD, is the Associate Attending Physician of the Clinical Genetics and Breast Cancer Medicine Services at Memorial Sloan-Kettering Cancer Center.
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