The National Heart, Lung, and Blood Institute (NHLBI) is currently seeking feedback on hemophilia inhibitors measures proposed for inclusion in the PhenX Toolkit (consensus measures for Phenotypes and eXposures). The PhenX Toolkit provides investigators with access to recommended well-established, low burden, standard measures for new or existing biomedical studies. The goal of the Toolkit is to encourage use of common measures to help researchers effectively collaborate and share data.
This has already been done very effectively for Sickle Cell Disease. Because of a similar need for standard measures in hemophilia and other hemostatic disorders, NHLBI sponsored a project for hemophilia to develop standard measures for inhibitor research. The Hemophilia Inhibitors Working Group has been working diligently for the past year to identify suitable measure protocols.
The PhenX Hemophilia Inhibitors Working Group invites you to provide input on the preliminary measurement protocols they have selected. All responses must be completed using the Feedback Form and submitted by email to feedback@phenx.org by February 19, 2019. Access the PhenX Portal to review the proposed hemophilia inhibitors measures.
