In Just Over Two Months, Personal Genetics Company Has Engaged Over 300 Individuals with Rare Blood Cancers in Research Utilizing Online Platform
Mountain View, CA – November 3, 2011 –
23andMe, Inc., an industry leader in personal genetics, announced today that Dr. Ruben Mesa has joined its Myeloproliferative Neoplasms (MPN) research project advisory board. In just over two months since its launch, this first-of-its-kind program has already enrolled over 330 individuals with these rare blood cancers in the 23andMe Personal Genome Service® and its MPN initiative. MPNs are a group of blood and bone marrow diseases that are characterized by abnormal levels of myeloid cells (red blood cells, white blood cells, and platelets).
Dr. Mesa has served as Professor of Medicine and Chair of the Division of Hematology & Medical Oncology at the Mayo Clinic since 2009, having first joined the Mayo Clinic in 2002. Dr. Mesa is recognized for his work at the Mayo Clinic where he has focused on advancing the understanding and therapy of the chronic MPNs. Dr. Mesa has been very active in evaluating novel therapeutics, implementing clinical trials, working with quality of life studies and very actively involved with national patient groups. He has been principal investigator or co-principal investigator in 35 clinical trials for patients with MPNs, or other myeloid disorders. He also is on the editorial board of the journal Blood, and several other key hematology journals. He divides his time equally between research, patient care, and the organization of clinical trials.
Dr. Mesa joins research collaborators Dr. Jason Gotlib and Dr. James Zehnder from the Stanford University School of Medicine and Stanford Cancer Institute as unpaid expert advisors on 23andMe’s Myeloproliferative Neoplasms science advisory board.
MPNs are a group of rare blood cancers including myelofibrosis, polycythemia vera, essential thrombocythemia, mastocytosis, and chronic myelogenous leukemia as the most common types. The cause of MPN is not known and each year, approximately 5,000-10,000 patients are diagnosed with these diseases in the United States.
“When I joined 23andMe in 2007 I believed that the 23andMe web-based research model could significantly advance research underfunded for rare diseases such as Myelofibrosis which has touched my family,” said 23andMe VP, and Chief Legal Officer, Ashley Gould. “I am confident that Dr. Mesa’s unsurpassed expertise in MPNs and cancer genetics will make a significant contribution as the newest addition to our research collaboration advisors.”
The MPN initiative takes advantage of the 23andMe web-based platform which is a unique approach to study rare and complex diseases that are difficult to assess using traditional research mechanisms. By using the Internet to query and interact with the research cohort, this platform significantly increases the efficiency and reduces the cost of recruiting participants and conducting research. The broad reach of the web allows geographically disperse individuals who are not near research centers be part of the program. Existing customers of 23andMe, who are not MPN patients, also contribute to this research by participating as healthy controls, a built-in efficiency that lowers the overall cost. Currently, nearly 90 percent of 23andMe’s 125,000 customers have consented for their DNA data to be utilized in such research efforts.
23andMe will engage the MPN research participants in a series of data gathering surveys to be released over several months. The initial survey focuses on an individual’s family history and MPN diagnosis, including the type of disease, who made the diagnosis, how the diagnosis was confirmed, how it progressed, as well as how and whether any previous genetic testing was conducted in relation to MPNs (such as genetic mutations). The follow up surveys will include questions pertaining to MPN symptoms and responses to medications used for the different MPN subtypes. There are currently no FDA-approved treatments for MPN, however physicians often prescribe medications “off-label” and try many different options to see what works for their patients.
MPN patients may enroll, at no cost, directly at https://www.23andme.com/mpn/
. 23andMe encourages physicians treating MPN patients to refer them to participate. MPN patients who enroll in the 23andMe MPN initiative will have access to the exact same data, information, tools, and 23andMe resources as individuals who have paid the full commercial price with lifetime subscription of $399 for the 23andMe Personal Genome Service®. Individuals can also choose to participate in the research efforts without viewing their personal data.
The 23andMe MPN project is modeled on its highly successful Parkinson’s Disease (PD) and Sarcoma communities. In less than two years, the PD initiative has recruited and analyzed approximately 6,000 participants. As a result of this analysis, 23andMe published research findings including two novel gene associations for PD as well as the discovery of the possible protective nature of the SGK1 gene for some individuals with high-risk genetic factors for Parkinson’s. In just over a year, the Sarcoma initiative has recruited and analyzed data from more than 600 participants. Early analysis efforts have revealed some suggestive genetic associations in sarcoma, proving 23andMe to be a valuable research platform for rare disease communities.
23andMe, Inc. is the leading consumer genetics and research company. Founded in 2006, the mission of the company is to help people access, understand and benefit from the human genome. The company was named by TIME as a “Genius Company” in 2018, and featured as Fast Company's #2 Most Innovative Health Company in 2018. 23andMe has millions of customers worldwide, with more than 80 percent of customers consented to participate in research. 23andMe, Inc. is located in Sunnyvale, CA. More information is available at www.23andMe.com.