Genotyping for Progress in Hemophilia

 
 

ensuring privacy

a cornerstone of My Life, Our Future is ensuring the confidentiality of all participants

The process is simple and confidential, and leverages a series of tested safeguards:

locally housed informationYour name and other identifying information never leave your hemophilia treatment center (HTC), so your confidentiality and privacy are protected.

CLIA certificationAll samples are sent to a Clinical Laboratory Improvement Amendments (CLIA)–certified reference laboratory for hemophilia genetic testing.

full clinical reportsYour HTC will receive a full clinical report to support your care, just as with other laboratory tests.

encoded samplesIf you choose to participate in research and provide written consent, your data and sample will be coded and all personally-identifying information will be removed.

limited data accessScientists and researchers will need to apply for access to the data or samples through the American Thrombosis and Hemostasis Network (ATHN) to support scientifically-sound research projects. A multidisciplinary independent committee will conduct a thorough review of these applications to determine the feasibility and scientific integrity of each project. ATHN maintains this database in accordance with their existing rigorous database management privacy policies.

GINA protectionThe Genetic Information Nondiscrimination Act (GINA) of 2008 prohibits insurance companies from using genetic information to make decisions about a person's health insurance eligibility, premium or coverage terms.

Health Insurance Portability and Accountability Act (HIPAA) complianceData/results transfer occurs only by HIPAA-compliant, secure methods.

If you have any questions about genotyping, or the My Life, Our Future process, we invite you to contact the staff members at HANDI, NHF's information resource center, who are available to answer live requests from Monday through Friday, 9:00 AM to 5:00 PM Eastern Time, at 800.42.HANDI. Requests can also be sent by fax to 212.328.3799 or email to handi@hemophilia.org. Information requests made through HANDI are always kept confidential.

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