Logo RIMS

Friday 23th – Saturday 24th November 2018
Marianne-Strauß-Klinik, Berg, Germany
The autonomous MS patient - Defining evidence gaps and setting an agenda for new collaborations

GENERAL OUTLINE

We would like to use this meeting to define where we are now regarding “patient autonomy in MS” and find ideas where to go next. Therefore, the first day will be used to provide an update on existing projects inspired by the MRC framework. Here, we will identify also research gaps. The next day will be used for group work to find ideas for new (SIG) projects. We will discuss those projects and present the most promising ideas to the whole group in order to choose our next SIG project to work on. All participants are invited to present their projects and project ideas by the end of October.

MEETING AGENDA

Friday, 23 November

      • 12:00 – 12:30 : Lunch
      • 13:00 – 15:00 : Where do we stand (part 1)? *An overview guided by the MRC framework.
        OVERVIEW:
        • The RR/SPMS patient
          • Treatment decision-making
          • MRI education
          • Lifestyle
          • Motherhood choice
          • Transition to SPMS

All partcipants are invited to present their work here. Just send us an e-mail by the end of October.

      • 15:00 – 15:30 : Coffee
      • 16:00 – 17:15 : The Marianne-Strauß-Klini
      • 17:15 – 18:30 : Where do we stand (part 2)? *An overview guided by the MRC framework.
        OVERVIEW:
        • The patient with severe MS
          • Guideline on palliative care
          • Home-based palliative care (PeNSAMI)
          • The PPMS patient
          • ...?

All partcipants are invited to present their work here. Just send us an e-mail by the end of October.

      • 19:30 : Social diner

Saturday, 24 November

      • 09:00 – 11:00 : Where do we need to go?
      • 13:00 – 15:00 : Where do we stand (part 1)?
      • An overview guided by the MRC framework.
        GROUP WORK:
        • Three/four groups (RR/SPMS (motherhood choice extra?), severe MS, PPMS, pediatric MS?
          Where do we need:
          • Reviews
          • Surveys (e.g. to define information needs)
          • Interventions
      • 11:00 – 11:30 : Coffee
      • 11:30 – 13:00 : Project idea presentations and discussion
      • 13:00 – 13:15 : Meeting wrap-up
      • 13:15 – 14:00 : Lunch and farewell
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