My Life, Our Future (MLOF) is a nationwide campaign offering free genetic testing, or genotyping, for people affected by hemophilia. The program is a partnership between several organizations, including NHF and has two goals: 1) To help families understand more about the disorder and 2) To help researchers and clinicians better understand connections between the disorder’s genetic cause and clinical outcomes. Learn more in this HemAware article.
Here, NHF talks to Dr. Ming Lim about how MLOF has impacted her research. Dr. Lim is a non-malignant hematologist, clinical researcher, and medical educator at the University of Utah, where she serves as the director of the Utah Center for Bleeding & Clotting Disorders.
Click here to listen to an audio clip from Dr. Ming Lim.
1) How is My Life, Our Future (MLOF) relevant to your work?
My research interest is in inhibitors in patients with non-severe hemophilia A (NSHA). It is well recognized that genetic factors play a key role in determining which patients develop inhibitors and which do not. The majority of studies looking at inhibitor development have focused mainly on patients with severe hemophilia A with limited data addressing the NSHA population. MLOF has helped address this limitation. Given the large number of participants with hemophilia of all severity including female carriers, who voluntarily contributed genotypic data and biologic samples to MLOF, this unique resource provided me the ability to answer my research question on determining the association between F8 mutation and inhibitor development in patients with non-severe hemophilia A that would otherwise have been challenging given the small number of patients with inhibitors in the NSHA population.
2) What sort of impact have you seen as a result of using MLOF in your work?
My work involving MLOF was able to identify additional F8 variants that are associated with inhibitor development in the NSHA population, including several typically found in non-White populations given the diversity of patients that participated in MLOF. This knowledge has helped to create awareness among both physicians and patients with NSHA on the genetic factors that can lead to inhibitor development. This is crucial for 2 reasons. Firstly, the risk of inhibitor development continues to increase with each exposure day to factor concentrates in patients with NSHA, unlike in severe HA where the inhibitor risk plateaus after 50-75 exposure days, and secondly, there are no evidence-based strategies for inhibitor eradication in NSHA patients once inhibitors have developed. So preventive strategies or treatment protocols to minimize inhibitor development in this patient population is essential.
3) What would you say to community members who are considering getting involved in MLOF?
I would recommend community members to consider applying for access to this rich and valuable resource to answer their research questions. As the largest hemophilia scientific resource of its kind in the world, we can now address many research questions that were limited by small numbers previously.
Learn more about MLOF here.
