My Life, Our Future—Genotyping for progress in hemophilia
Since My Life, Our Future (MLOF) began in 2012, hemophilia treatment centers (HTCs) and patients across the country have taken part in this impactful initiative. Thanks to their support, we have been able to meet and exceed the two primary program goals, genotyping nearly 10,000 people with hemophilia, and creating the world’s largest genetic hemophilia research repository. Further still, we expanded the program to include known or potential carriers of hemophilia.
Much like a fingerprint, genotype can provide meaningful information about hemophilia. It has the power to help patients understand their family's mutation, offer clues to inhibitor risk, provide a window into bleeding severity, and take a step toward better treatment. MLOF participants have helped create the world’s largest genetic hemophilia repository, the My Life, Our Future Research Repository, a collection of samples and data for scientific study.
Important enrollment updates
Enrollment in MLOF ended on December 15, 2017. Samples must arrive at Bloodworks Northwest by December 20, 2017; they will not be accepted after this date. Genotyping results for samples received by December 20, 2017 will be returned during the first half of 2018. Further information about IRBs, contracting arrangements, and data cleaning at the HTC level is forthcoming.
For decades, the hemophilia community has worked together in hopes of a brighter future. This initiative was founded through a partnership between ATHN, NHF, Bloodworks Northwest, and Bioverativ. Now, we can pass something powerful to the next generation—knowledge.