Photo by Darren Baker
Scientist in the lab
A new resource has been made available for US-based scientists studying hemophilia A and B.
The resource—known as the My Life, Our Future Research Repository—is a collection of genetic data and blood samples that are linked to phenotypic data from more than 5000 hemophilia patients in the US.
Academic and industry scientists within the US can now access the repository but must apply to do so.
Scientists outside of the US should have access to the repository in 2018.
My Life, Our Future is a program founded by the American Thrombosis and Hemostasis Network, Bloodworks Northwest, the National Hemophilia Foundation, and Bioverativ.
My Life, Our Future was launched in 2012 to increase genotyping among individuals with hemophilia A and B, as well as potential and confirmed carriers of the disorder. The program will be available at participating hemophilia treatment centers through the end of 2017.
My Life, Our Future provides hemophilia patients (and potential/confirmed carriers) with free genotyping, and patients can then consent to add their de-identified genetic data and blood sample to the My Life, Our Future Research Repository.
Eighty-three percent of genotyped patients have contributed their data and blood samples. This is more than 5000 individuals representing more than 25% of the US hemophilia population.
The information provided by these individuals has led to the discovery of more than 600 new genetic variants that cause hemophilia.
“Hemophilia is a complex disorder, and, prior to today, there was no genetic and phenotypic database of this scale aiding scientific innovation,” said Barbara Konkle, MD, associate chief scientific officer of Bloodworks Northwest and principal investigator for My Life, Our Future.
“With this new resource, researchers now have one source for the genetic data, repository samples, and clinical data needed to investigate the many unanswered questions about hemophilia.”
Accessing the repository
To access the samples and data in the repository, scientists must first submit a letter of intent to the American Thrombosis and Hemostasis Network.
Scientists may then be asked to submit a full research proposal, which will be evaluated by a research review committee—a group of experts including a molecular pathologist, genetic counselor, research scientist, molecular biologist, genetic epidemiologist, molecular epidemiologist, geneticist, patient representative, and hematologists.
Approved scientists will be selected based on the scientific merit of their proposals and level of benefit to those with bleeding disorders.
For details on how to apply, visit ATHN.org/MLOF.
