May 19, 2021

Important research using data from the My Life, Our Future (MLOF) Research Repository Phase One has been published in Frontiers in Medicine.

The article, “HLA Variants and Inhibitor Development in Hemophilia A: A Retrospective Case-Controlled Study Using the ATHNdataset” by Joseph R. McGill, Vijaya L. Simhadri, and Zuben E. Sauna, is based on a study aimed at providing estimates of inhibitor risk associated with the human leukocyte antigen (HLA) in patients with hemophilia A.  

According to the article, there is wide recognition that genetic factors play a role in determining which patients develop inhibitors and which do not. However, identifying the genetic markers of immunogenicity is challenging.

This study used next-generation sequencing for high-resolution HLA Class II typing in patients with hemophilia A along with inhibitor prevalence reports from the MLOF Research Repository to calculate the odds ratios for inhibitor development based on various genetic factors. The researchers concluded that the HLA repertoire of a hemophilia A patient can be a risk factor for inhibitor development, representing a significant step toward better understanding of inhibitors and improving clinical care.

“This research is only possible thanks to the more than 9,000 volunteers who shared their clinical and genetic data through My Life, Our Future,” said NHF president and CEO, Leonard A. Valentino, MD. “These generous individuals show the importance of an engaged patient community, and the power of participation in advancing research.”

The MLOF Research Repository
My Life, Our Future was conducted from 2012 to 2018 through a partnership between the American Thrombosis and Hemostasis Network (ATHN), Bloodworks Northwest, and the National Hemophilia Foundation with support from Bioverativ. The initiative was designed to engage the community to co-create a large repository of genotypic and phenotypic data for people with hemophilia, which could be used to accelerate research and advance care. As part of the process, more than 11,000 people received free genotyping, and more than 9,000 of those participants contributed their genetic data and biologic samples to create the MLOF Research Repository, the largest hemophilia scientific resource of its kind in the world.

We encourage you to read the article to learn more about this significant research.

If you have any questions about the MLOF Research Repository, please contact support@athn.org.  

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