In 2014, the IPSG Clinical Prophylaxis Expert Working Group was formed by combining 2 previously separate groups, the Prophylaxis in Inhibitor Working Group and the Adolescent/Adult Expert Working Group, both of which originated in 2008. This coincided with the launch of a joint initiative focused on the use of long-term prophylaxis in hemophilia patients in whom prophylaxis has traditionally been underutilized.
The goal of this international survey was to evaluate the extent of prophylaxis use in 2 groups of patients: adult hemophilia patients without inhibitors and patients of all ages with inhibitors. Despite clinical trial data demonstrating efficacy of prophylactic therapy in both groups of patients, many of these patients are not on regular prophylaxis. As a result, the IPSG Adolescent/Adult and Inhibitor Positive Patient Prophylaxis Survey was launched in late 2013. Results from the survey were recently presented at the 2015 International Society of Thrombosis & Haemostasis Congress (Carcao, M et al) and the 2015 American Society of Hematology Meeting (Aledort, L et al).
The group is now looking forward to exploring opportunities and initiatives focused on prophylaxis using extended half-life products, as well as prophylaxis with recently developed and more advanced bypass therapies and factor mimetics .
Aledort L, Avila ML, Blanchette V, Lambert T and On behalf of Factor Utilization Expert Working Group of the International Prophylaxis Study Group (IPSG) and other Survey Investigators. Prophylaxis in adult patients with severe hemophilia A or B without inhibitors. Journal of Thrombosis and Haemostasis 2015, 13 (S2), # OR105, 134.
Carcao M, Avila M, Aledort L, Leissinger C on behalf of Factor Utilization Expert Working Group of the International Prophylaxis Study Group (IPSG) and other Survey Investigators. Prophylaxis practices in children and adults with inhibitors. Journal of Thrombosis and Haemostasis 2015, 13 (S2), # PO270-MON, 360.
Carcao M, Avila L, Blanchette V, Santagostino E, Escuriola-Ettingshausen C, Leissinger C, Lambert T, Aledort L on behalf of the International Prophylaxis Study Group (IPSG) and Survey Investigators. Hemophilia prophylaxis no longer just for children without inhibitors – increasing use of prophylaxis in other groups (children with inhibitors and adults with and without inhibitors). Poster presentation, 57th American Society of Hematology Meeting 2015.
|Prophylaxis Expert Working Group|
|Dr. Thierry Lambert||(France) [Co-Chair]|
|Dr. Cindy Leissinger||(USA) [Co-Chair]|
|Dr. Lou Aledort||(USA)|
|Dr. Manuel Carcao||(Canada)|
|Dr. Johnny Mahlangu||(South Africa)|
|Dr. Margareth Ozelo||(Brazil)|
|Dr. Rungrote Natesirinikul||(Thailand)|
|Dr. Elena Santagostino||(Italy)|
|Dr. Carmen Escuriola-Ettingshausen||(Germany)|
|Dr. Runhui Wu||(China)|