· A pilot proposal to determine feasibility of multinational biological studies in children (in preparation for the full research study on environmental risk factors in MS) has been funded by the Multiple Sclerosis International Federation and the Italian MS Society. The project will begin in the first half of 2011.
· The first IPMSSG Research Symposium on Pediatric MS was held on the 3-4 April 2009 in Toronto, Canada. The aim of this meeting was to provide a forum for discussion and development of two key flagship research projects to full funding proposals. The meeting was attended by over 40 members of the IPMSSG (including pediatric and adult neurologists, researchers, and MS society staff representing 17 countries). Invited speakers provided content expertise in clinical epidemiology, immunology, vitamin D, information technology and genetics.
· In October 2008, Dr. Andrew Kornberg was appointed as Chair of the Outreach and Education Committee to replace Prof. Hanefeld.
· In March 2008, Dr. Evangeline Wassmer was appointed to the Steering Committee to replace Prof. Hanefeld who retired earlier this year.
· The Research committee of the IPMSSG met by teleconference on the 29th October 2008 to discuss the planned Pediatric Research meeting and progress on the research flagship proposal.
· The Steering Committee of the IPMSSG met on Friday the 19th September 2008 from 12-2pm during the World Congress on MS in Montreal. Plans were set in place to hold a Pediatric Research meeting from 2-5 April 2009 in Toronto.
· At the end of April 2008, the Research committee met by teleconference to discuss the possibility of holding a Pediatric MS Research meeting in September. The meeting 'organising committee' will be discussing agenda and speaker lists to be endorsed by the Steering committee in May.
· In April 2008, the Clinical committee met by email to discuss the 2 clinical focused flagship projects. One was a proposal for 'standardisation of datasets in acquired inflammatory disorders' and the other a 'registry to evaluate therapeutic practices in acquired demyelinating disorders'. There was a general consensus to start with preparation of a database to proceed with the first project.
· Steering Committee sent a proposed timeline of events.
· Website updated to include details of the current projects, charter/by-laws and committees of the IPMSSG.
· Research and Clinical committees planning to meet (by teleconference) by early April 2008 to discuss developing the flagship projects letters of intent to full project proposals and appointing work groups (sub committees) to work on different aspects of the projects.
· Survey being designed to be sent to all relevant and appropriate individuals to enrol/recruit general members and gauge interest in serving on the work groups. Several members have already shown interest and willingness to take part in various projects.
· Process being developed to welcome/induct global members in 2009.
· Email lists of all committee and current general members created in 2008.
· Face to face meeting of the IPMSSG steering committee (and members of the other committees) in Montreal in September 2008 being planned - timed to coincide with ECTRIMS/ ACTRIMS/ LACTRIMS. We will use this opportunity to bring together committee members and work groups to proceed on the projects and also to recruit new members to the study group.
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