In 2002, the MRI Expert Working Group held their first meeting and a business plan was developed. Following this, in March 2003, Drs. Kilcoyne, Babyn, Lundin and Doria met in Toronto, Canada. Their collaborative work produced two publications, (Lundin B et al., 2005 & Doria AS et al., 2005). Also in 2003, the MRI Expert Working Group convened during the first IPSG Symposium in Montreal, Canada to review the work from the meeting in March and to plan the group’s future goals and activities.
The IPSG Pharmacokinetics Expert Working Group was formed in 2009 with the aim of addressing a number of questions relating to the potential utility for pharmacokinetics (PK) to monitor and prescribe prophylaxis in people with haemophilia. Members of the PK Expert Working Group are collaborating with a number of organisations and other groups, in addition to continuing their own work, in an effort to reduce duplication of effort.
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.
Physical Health and Joint Function (Formerly Physical Therapy)
The IPSG PT Expert Working group held their 1st meeting during the IPSG meeting in November, 2002. At this meeting, the group planned to harmonize existing joint health scores (WFH, Colorado, and Stockholm) to develop a more sensitive tool. The following year, a new consensus measure was developed called the Hemophilia Joint Health Score (HJHS) version 1.0; an 11-item scoring tool for assessing joint impairment in children ages 4 to 18 years.