About IPSG
The International Prophylaxis Study Group (IPSG) was founded in 2001. One stimulus for the creation of the collaborative group was the recognition by a number of leading hemophilia caregivers worldwide that an evidence-based approach was increasingly being requested by funding agencies to justify the very high cost of long-term prophylaxis. In recognition of this gap in information a major focus of the IPSG has been the development and testing of key outcome measures [eg the Hemophilia Health Joint Score (HJHS) and the IPSG Magnetic Resonance Imaging MRI scale] relevant for assessment of the musculoskeletal benefits of long-term prophylaxis with clotting factor concentrates. The unwavering dedication and commitment of Co-Founder, Dr. Victor S. Blanchette remains a true testament to the longstanding collaboration and success of the IPSG.
Executive Committee
The work of the IPSG Expert Working Groups is overseen by an Executive Committee. The Operations office of the IPSG is located in the Hospital for Sick Children, Toronto, Canada and is coordinated by Audrey Abad.
Chair, International Prophylaxis Study Group
Dr. Rolf Ljung
MD, PhD, Professor of Pediatrics
Co-Chair, Access Expert Working Group; Executive Member, International Prophylaxis Study Group
Dr. Louis Aledort
MD
Executive Member, International Prophylaxis Study Group
Dr. Guy
PHD
Executive Member, International Prophylaxis Study Group
Dr. Manuel Carcao
MD, MSc
Operations Coordinator, International Prophylaxis Study Group; Coordinator Musculoskeletal Health & Access Expert Working Groups
Ms. Audrey Abad
Expert Working Groups
The current membership of the IPSG includes 50 professionals from 16 countries. These experts constitute the membership of the four Expert Working Groups of the IPSG:
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.
Other Related Resources
Below is a list of other related resources on hemophilia care, research, and global health standards. These organizations provide valuable information, clinical guidelines, and support networks for healthcare professionals, researchers, and individuals affected by inherited bleeding disorders.
- Centers for Disease Control and Prevention (CDC) – Providing scientific research, public health data, and resources for bleeding disorder management.
- The World Federation of Hemophilia (WFH) – A global network dedicated to improving diagnosis, treatment, and quality of life for people with bleeding disorders.
- World Health Organization: International Classification of Functioning, Disability, and Health (ICF) – A framework for assessing health conditions, disability, and functional outcomes worldwide.
- https://www.eahad.org/
- https://www.isth.org