PhenX Measures for Hemophilia Inhibitor Research

In 2018, the National Heart, Lung, and Blood Institute (NHLBI) launched the PhenX Measures for Hemophilia Inhibitor Research Project to establish a framework for data sharing across different research projects. As a result of this project, a Collection of standard measures were selected by the Hemophilia Inhibitor Research Working Group. These measures were added to the Toolkit in May of 2019. Consistent use of the standard measures in these Collections will establish a common currency to help researchers to better understand the etiology, progression, and treatment of hemophilia inhibitors.

The Hemophilia Inhibitor Research Collection is a result of a collaborative, consensus effort by the extramural scientific community and staff members at NHLBI. Further details about the PhenX Measures for Hemophilia Inhibitor Research project can be found here.

Hemophilia Inhibitor Research Specialty Collection

The Hemophilia Inhibitor Research Working Group selected 17 measures and 38 protocols recommended for use by all NHLBI-funded investigators performing human subjects research in hemophilia inhibitors. The Collection includes protocols to determine levels of Factor VIII and Factor IX, quantify inhibitors to Factor VIII and Factor IX, measure the biological response to therapeutics, and capture key outcomes. These protocols are designed to create a common framework to facilitate cross-study data aggregation and to address questions related to the effects of a key set of related factors on relevant outcomes.