NEW YORK (GenomeWeb News) – Two patient advocacy groups, Biogen Idec, and a medical center have teamed up to offer free or low-cost genetic testing to people with hemophilia and their families to identify ways to personalize patient care, generate new genetic information, and help create a database for use in research.
The National Hemophilia Foundation said today that the project, called My Life, Our Future: Genotyping for Progress in Hemophilia, is aimed at providing useful genetic and clinical information to clinicians, researchers, and patients by removing the primary barrier to genetic testing — cost and insurance coverage.
Biogen Idec Hemophilia, a business unit of Biogen Idec focused on hemophilia, will provide the financial support for the initiative, as well as scientific advice and project management support, although the company will not receive special access to the data or samples involved.
The testing program will be made available through participating hemophilia treatment centers beginning in 2013. It initially will be offered to people with hemophilia A and B and over time will be expanded to potential carriers and their families.
Other partners involved in the project with NHF and Biogen Idec Hemophilia include the American Thrombosis and Hemostasis Network and the Puget Sound Blood Center.
NHF said that research has shown that some genetic mutations are associated with an increased risk for severe bleeding and inhibitors, major hemophilia treatment complications involving an immune system response. Testing can enable healthcare providers to tailor their treatments based on genotype, and women in a patient's family also may be tested for the gene for hemophilia and could receive genetic counseling for family planning and pregnancy care, NHF said.
Despite the possible benefits of genotyping for hemophilia patients, only around 20 percent of people with hemophilia in the US have been genotyped, although more than 75 percent of people responding to a recent survey expressed an interest in receiving testing, NHF said. According to that survey, cost and insurance coverage restrictions were the main reasons people gave for not getting tested.
“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,” NHF CEO Val Bias said in a statement.