Leaders in the bleeding disorders community (Bloodworks Northwest, the American Thrombosis and Hemostasis Network, the National Hemophilia Foundation and Bioverativ) have come together to open the largest genetic hemophilia repository to medical researchers titled the My Life, Our Future Research Repository.
The research repository is a collection of genetic information and blood samples linked to phenotypic data from more than 5,000 hemophilia patients in the U.S.
The repository was designed to help scientists make advancements in hemophilia research, including the study of genetic differences that affect bleeding severity and reaction to specific treatments.
The My Life, Our Future Research Repository will open to U.S.-based investigators this year, before expanding to internationally in 2018.
Scientist who want to access the repository must submit a proposal to My Life, Our Future for evaluation by the research review committee. Those approved, will be selected based on the scientific merit of their proposals and level of benefit to those with bleeding disorders.
About hemophilia & bleeding disorders
There are many different types of bleeding disorders, including hemophilia (types A and B), other clotting factor deficiencies, and platelet disorders. Most are rare conditions. Individuals with these conditions have clotting factor proteins or platelets that work poorly, if at all. For example, hemophilia B results from a deficiency in a clotting factor called factor IX while hemophilia A is from a deficiency in factor VIII,.
The severity of symptoms varies based on the amount of clotting factor involved and its degree of functioning. Without proper treatment, affected individuals may suffer from severe pain or permanent joint damage. Severe bleeds into the brain or other organs can cause death