Working Groups
The IPSG Expert Working Groups bring together leading experts from around the world to advance research, develop clinical assessment tools, and improve treatment strategies for individuals with hemophilia and inherited bleeding disorders. Their collective efforts have resulted in significant advancements, shaping best practices and influencing clinical guidelines globally.
Imaging Expert Working Group
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.
Clinical Pharmacology (Formerly PK) Expert Working Group
The IPSG Clinical Pharmacology Expert Working Group was founded in 2009. Initially known as the IPSG Pharmacokinetics Expert Working Group, the group aims to investigate the pharmacokinetic and pharmacodynamic relationship between factor and non-factor exposure and bleeding, clinical or subclinical outcomes.
Musculoskeletal Health Expert Working Group
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.
Clinical Prophylaxis Expert Working Group
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.
Access Expert Working Group
In health care, “access” can be defined as the opportunity or right to receive health care. Accessibility has many aspects e.g. infrastructure, reimbursement, health workforce and others. One of the major success factors of treatment is access to the right drug therapy at the right time for the right patient and finally reimbursement of the drug.