Note: The My Life, Our Future Research Repository includes the largest bank of genomic and phenotypic data about people with hemophilia.
While research in hemophilia has advanced tremendously in recent decades, there is still so much to learn about the individual experience of people with various types of hemophilia.
This is why NHF partnered together with the American Thrombosis and Hemostasis Network (ATHN) and Bloodworks Northwest (BWNW) to encourage community participation in My Life, Our Future (MLOF).
Through this nationwide campaign, we offered free genotyping so that participants could gain a deeper understanding of their hemophilia, while helping to advance hemophilia science and breakthrough treatments. Thanks to the more than 11,000 individuals who participated in the program, together we’ve created the largest hemophilia research repository in the world.
Now, the initiative takes on a new form as we invite researchers to access this unparalleled database and mine for insights that could accelerate new breakthroughs in hemophilia care.
“We’re so grateful to the many families who participated in My Life, Our Future. Thanks to your contribution, we’ve generated an incredibly rich database of hemophilia data, which holds critical information that will help us advance care for future generations,” said Leonard A. Valentino, MD, president and CEO of NHF. “We’re very pleased to continue this collaboration with ATHN and Bloodworks Northwest to support new research initiatives.”
This week we’ve announced a call for proposals for MLOF Research Repository applications. We’re encouraging researchers who are passionate about advancing the science of hemophilia who have ideas that could be answered through this rich database of genotypic and phenotypic data, to submit a pre-proposal for consideration by January 15, 2021.
“There are critical untapped insights in this repository, and the community has the opportunity to answer truly important questions about patient care if we can expand access to the raw data available in this resource,” said Crystal Watson, president and CEO of ATHN. “We encourage researchers to submit a pre-proposal to be considered for participation.”
Source: National Hemophilia Foundation