International Prophylaxis Study Group (IPSG)
The International Prophylaxis Study Group (the IPSG) is a not for profit collaborative group of health care professionals involved with the assessment and care of individuals with inherited bleeding disorders , in particular hemophilia A and B . The goal of the IPSG is to facilitate the acquisition of new knowledge concerning long-term, regular replacement therapy (“prophylaxis”) in persons with inherited bleeding disorders, and to disseminate this information globally.
The 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 work of the IPSG Expert Working Groups are overseen by an Executive Committee (Chair: Dr Victor Blanchette (Canada); Co-Chairs: Drs Lou Aledort (USA) and Rolf Ljung (Sweden). Profiles of the IPSG Executive Committee are attached. The Operations office of the IPSG is located in the Hospital for Sick Children, Toronto, Canada. The Co-ordinator for the IPSG is Audrey Abad.
Funding for activities of the IPSG is provided by Educational grants from Bayer HealthCare, Bioverativ (A Sanofi Company), Novo Nordisk Healthcare AG, Pfizer, Shire, and Spark Therapeutics to the Hospital for Sick Children (“Sickkids”) Foundation.
The current membership of the IPSG includes 30 professionals from 9 countries. These experts constitute the membership of the four Expert Working Groups of the IPSG:
- The Imaging Expert Working Group
[Co-Chairs: Dr. Björn Lundin (Sweden) and Dr. Paul Babyn (Canada)]
- The Physical Therapy (PT) Expert Working Group
[Co-Chairs: Dr. Marilyn Manco-Johnson (USA) and Dr. Janjaap van der Net (The Netherlands)]
- The Pharmacokinetics (PK) Expert Working Group
[Co-Chairs: Dr. Massimo Morfini (Italy) and Dr. Guy Young (USA)]
- Prophylaxis Expert Working Group
[Co-Chairs: Dr. Thierry Lambert (France) and Dr. Cindy Leissinger (USA)]
- Access Expert Working Group
[Co-Chairs: Dr. Karin Berger (Germany) and Dr. Louis Aledort (USA)]