Leaders in Hemophilia Advocacy, Healthcare Delivery and Biotechnology Including Biogen Idec, Inc. (Massachusetts) Partner to Offer Free Genetic Testing to People With Hemophilia
Published: Nov 08, 2012
The initiative, called My Life, Our Future: Genotyping for Progress in Hemophilia, is a partnership of the NHF, theAmerican Thrombosis and Hemostasis Network (ATHN), Puget Sound Blood Center(PSBC), and Biogen Idec (NASDAQ: BIIB). It is designed to help uncover genetic information that can be used by physicians to individualize the care of people with hemophilia, as well as generate data that may lead to new scientific discoveries.
Genetic testing, or genotyping, is used to identify the genetic mutation that causes hemophilia, a rare inherited disorder that impairs blood clotting. Research has shown that certain mutations are associated with an increased risk for severe bleeding and inhibitors, a major complication that involves an immune response to treatment. Healthcare providers can tailor treatment to the individual needs of patients when these risks are understood. In addition, women in a patient’s family are often tested to determine if they carry the gene for hemophilia, and genetic counseling can inform family planning and pregnancy care.
“This partnership is about helping people affected by hemophilia gain a better understanding of their genetic make-up and working with healthcare providers to use that information to provide more individualized care tailored to the needs of families,” said Val Bias, Chief Executive Officer of NHF.
Program Will Address Barriers to Genotyping
Despite the potential benefits, only about 20 percent of people with hemophilia in the U.S. have been genotyped, according to a survey of healthcare providers conducted by ATHN. In addition, the U.S. lags behind other developed countries such as Australia and the U.K., which offer genotyping to people with hemophilia as a matter of standard care.
In a recent NHF survey of the hemophilia community, cost and insurance coverage restrictions were cited as primary barriers to genetic testing by people who did not know their genotype. Overall, more than 75 percent of survey respondents expressed a strong interest in receiving free or very low cost genotyping through this new initiative.
“We hope that many people will participate in the My Life, Our Future program to learn more about their genetic profile and to contribute knowledge that may help future generations,” said Barbara Konkle, M.D., Director of Clinical and Translational Research at PSBC. “As a physician, I believe this initiative will provide Hemophilia Treatment Centers with a critical tool to individualize care for people with hemophilia and their families today.”
National Database and Research Repository Will Be Enhanced
Beyond receiving their individual genotyping results, participants can help accelerate scientific research in hemophilia by contributing data and samples to a secure national database and research repository. In the future, scientists can apply through ATHN for access to the data or samples to conduct research.
The confidentiality of participants who contribute their data and samples will be protected. Patient identifying information will not be entered into the database and the repository, nor given to researchers.
“With an enhanced database, researchers will be able to investigate the connection between the genetic cause of hemophilia and clinical outcomes,” said Diane Aschman, President and Chief Executive Officer of ATHN. “Future researchers will be better equipped to improve the care of hemophilia and identify new treatment approaches.”
A Partner Dedicated to Serving the Hemophilia Community
Biogen Idec Hemophilia, a business unit of Biogen Idec with expertise in hemophilia and genetic medicine, will provide financial backing for the initiative, aswell as scientific advice and project management support.
“Our goal is to empower people with hemophilia to live the lives they choose,” said Glenn Pierce, M.D., Ph.D., Chief Medical Officer of Biogen Idec Hemophilia. “This initiative fits perfectly with our mission because it offers knowledge to patients, their families, healthcare providers and researchers that can improve care and advance science.”
The company is supporting My Life, Our Future as a service to the community, and will not have special access to the data or samples generated by the initiative.
About My Life, Our Future: Genotyping for Progress in Hemophilia
My Life, Our Future is a partnership of the National Hemophilia Foundation (NHF), the American Thrombosis and Hemostasis Network (ATHN), Puget Sound Blood Center(PSBC), and Biogen Idec Hemophilia. The program will offer free or very lowcost genotyping to people affected by hemophilia in the U.S., and will become available through participating Hemophilia Treatment Centers (HTCs) in 2013. Initially, the service will be offered to people with hemophilia A and B. Over time, it will be expanded to include potential carriers in their families. For more information, visit www.MyLifeOurFuture.org.
About The National Hemophilia Foundation (NHF)
The National Hemophilia Foundation (NHF) is dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research. Established in 1948, NHF is based in New York City with 51 chapters throughout the United States. NHF’s programs, initiatives and events are made possible through the generosity of individuals, corporations and foundations as well as through a cooperative agreement with the Centers for Disease Control and Prevention (CDC). For more information, visit NHF online at www.hemophilia.org.
About The American Thrombosis and Hemostasis Network (ATHN)
The American Thrombosis and Hemostasis Network (ATHN) is a non-profit organization committed to advancing and improving care for individuals affected by bleeding and thrombotic disorders. ATHN’s mission is to provide stewardship of a secure national database, adherent to all privacy guidelines, which will be used to support clinical outcomes analysis, research, advocacy and public health reporting in the hemostasis and thrombosis community. ATHN represents over 130 Hemophilia Treatment Centers. More information is available at www.athn.org.
About The Puget Sound Blood Center (PSBC)
Puget Sound Blood Center is an independent, community-based nonprofit organization with a tradition blending volunteerism, medical science and research to advance transfusion medicine and improve patient care. A recognized leader in transfusion medicine, the Blood Center serves patients in more than 70 hospitals and clinics in 14 Western Washington counties. Patients with leukemia, cancer, hemophilia, thrombosis, sickle cell disease and traumaticinjuries depend on Blood Center research. PSBC has a state-of-the art laboratory with world-class expertise in hemophilia mutation analysis. Moreinformation is available at www.psbc.org.
About Biogen Idec
Through cutting-edge science and medicine, Biogen Idec discovers, develops and delivers to patients worldwide innovative therapies for the treatment of neurodegenerative diseases, hemophilia and autoimmune disorders. Founded in 1978, Biogen Idec is the world's oldest independent biotechnology company, and patients worldwide benefit from its leading multiple sclerosis therapies. For more information, please visit www.biogenidec.com.
Biogen Idec Safe Harbor
This press release contains forward-looking statements, which speak only as of the date of this press release. Actual results may differ materially from our expectations due to the risks and uncertainties described in Biogen Idec’s periodic reports filed with the Securities and Exchange Commission.
Kathleen Van Gorden
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