![]() To identify current PROs and PROMs to be used in clinical care and collected in registries and advice relevant regulatory agencies and clinicians. Lerici’s meeting: priority areas and strategic objectivesġ8 MULTI-STAKEHOLDER MEETING – LERICI, JULY 2018 CLINICAL MANAGEMENT: STRATEGIC OBJECTIVES This is particularly important for ensuring content validity To fill critical gaps in the knowledge base that are hindering progress toward the development of a clear roadmap for research needs and progress To research, validate and develop relevant PROMs Patrick Vermersch. Lerici’s meeting: cathegories stakeholders that attended the meeting Industryġ7 MULTI-STAKEHOLDER MEETING – LERICI, JULY 2018 RESEARCH, VALIDATION AND DEVELOPMENT: STRATEGIC OBJECTIVES To identify functional domains that matter most to people with MS that will lead to the prioritization of functional domains. MS Organizations Research and education organizations Care providers Academia Patrick Vermersch. ![]() Lerici’s meeting high level outcomeġ6 STAKEHOLDERS ATTENDING LERICI MEETING, JULY 2018 Several global initiatives are defining and shaping this developing field However, despite differences in viewpoint, the different stakeholders agree that PRO and PROMs have not reached their full potential of delivering benefits to patients Patrick Vermersch. Science with/of Patient Input are instrumental to empower experiential knowledge (Adapted from David Somekh, European Health Management Association, 2016ġ5 MULTI-STAKEHOLDER MEETING – LERICI, JULY 2018 HIGH LEVEL OUTCOME Science with/of Patient Input Patrick Vermersch. Patient-provided information include PRO (ġ4 THE FUTURE OF PATIENTS: “EMPOWERING EXPERIENTIAL KNOWLEDGE” ….What began as an extension of patient advocacy is now evolving into an emerging scientific discipline aimed at understanding and incorporating patient needs and perspectives into the processes of developing, regulating, and delivering new therapies as well as improving care…. What matter to patients? Towards the agenda of PROMS Initiative: Lerici’s meeting outcomes and strategic objectives. PROMS agenda) is the explicit driver (of MULTI-ACT framework) to impact on people with MS and the other stakeholdersĢ016 Patrick Vermersch. Need for a collective research impact frameworkġ1 IMPACT OF RESEARCH ON PEOPLE WITH MS The Mission: the explicit driverEOPLE WITH MS The Mission: the explicit driver Mario Alberto Battaglia. The collaboration with Accelarated Cure: going beyond Europeġ0 15th May, 2018 Mario Alberto Battaglia. TM PROOF OF CONCEPT STUDY – iConquer MS – PROMOPROMS 30th May, 2018 Mario Alberto Battaglia. EMA recommendation: Patient Representatives to “Advise on appropriate patient reported outcomes that might feasibly be collected and included in registries” Patient Representatives to: “Advise on appropriate patient reported outcomes that might feasibly be collected and included in registries” 7th July 2017 - Multiple sclerosis workshop -ĩ PROOF OF CONCEPT STUDY – iConquer MS – PROMOPROMS 30th May, 2018 Regulatory authorities Registry holders/academia Pharmaceutical companies Aim To explore ways of increasing use of patient registries by supporting a more systematic and standardised approach to their contribution to the benefit-risk evaluation of medicines Mario Alberto Battaglia. How PROMS is in line with what is happing in initiatives engaging Italy and Italian MS Societies? International experience in applying framework for Multistakeholder Research Initiatives (coordinator of EU H2020 Responsible Research Innovation MULTI-ACT project) Mario Alberto Battaglia. AISM is working on an international project to standardize and harmonize PROs between their own PROMOPRO-MS database and iConquerMS (Accelerated Cure Project) network. Lead Agency: Italian MS Societyħ AISM Lead Agency Contributing to the Patient Registry Initiative promoted by EMA PROs for MS research and healthcare. ![]() MS Societies and Current iPRO Partnership MSIF. Meeting MSIF Strategy MSIF Lead Agency “Global collaborations for registries or databases in relation to Patient Reported Outcomes”Ħ MS SOCIETIES AND CURRENT IPRO PARTNERSHIP MSIF LEAD AGENCY: ITALIAN MS SOCIETY ![]() ![]() A global and multistakeholders initiative MSIF Lead Agencyĥ MSIF STRATEGY Peer Baneke. MSIF Strategy Multistakeholders PRO Lerici’s meeting Peer Baneke. Introduction of the Members of Panel Peer Baneke, UK Multiple Sclerosis International Federation (CEO) Mario Alberto Battaglia, Italy Italian Multiple Sclerosis Society Foundation (President) Giancarlo Comi, Italy European Charcot Foundation (President) Patrick Vermersch, France European Charcot Foundation (Board Member) Moderator: Pamela Valentine, Canada MS Society of Canada (President & CEO)Ĥ PATIENT REPORTED OUTCOME CALL TO ACTION 3 Members of the panel Peer Baneke, UK Mario Alberto Battaglia, Italy ![]()
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