Videos & Interviews

PROMS Plenary Event 2023

Welcome Session – A Leap Towards Humanism in MS Research and Care

The session included:  

  • Giancarlo Comi | European Charcot Foundation and co-Chair PROMS Executive Committee (EC)
  • Peer Baneke | MS International Federation and co-Chair PROMS Executive Committee (EC)
  • Helga Weiland | co-leader PROMS Engagement Coordination Team (ECT)
  • Paola Zaratin | Italian MS Society and co-Chair PROMS Scientific Steering Committee (SSC)

PROMS Plenary Event 2023

Session 1 – Role of PROMs and patient-generated data in unmasking “unrecognized” progresion

Moderator: Xavier Montalban|Cemcat HU Val d’Hebron

 

The session included:  

  • Angela White for Patient Perspective on Clinical Consultation (and Roundtable) – Engagement Coordination Team representative
  • Valerie Block as Keynote Speaker on Unrecognized Progression – University of California San Francisco (UCSF)
  • Paul Kamudoni as Industry Representative – Merck
  • Per Soelberg Sørensen & Daniel Ontaneda as Clinicians (Roundtable) – University of Copenhagen & Cleveland Clinic Foundation
  • Helga Weiland for Patient Perspective (Roundtable) – Engagement Coordination Team Co-Chair

PROMS Plenary Event 2023

Session 2 – Valuing the experiential knowledge of people living with the disease

Moderator: Mario Alberto Battaglia|Italian MS Society

The session included: 

    • Giampaolo Brichetto as Researcher (PROMS Survey) – Italian MS Society, PROMS WG1
    • Susanna van Tonder for Patient Perspective on Survey – Engagement Coordination Team representative
    • Patricia Moghames as EMSP Representative (IMSS Survey) – European Multiple Sclerosis Platform
    • Paul Kamudoni as Industry Representative – Merck
    • Maria Pia Sormani as Speaker on clinical trials and PROMs – University of Genoa

    PROMS Plenary Event 2023

    Session 3 – Lessons learnt from existing PROMs

    Moderator: Timothy Coetzee|United States MS Society

    The session included: 

      • Robert McBurney as Researcher (PROs for Clinical Management) – Accelerated Cure Project, PROMS WG2
      • Jeremy Hobart as Speaker on the risks of clinical errors in PROMs use – University of Plymouth
      • Rod Middleton as Speaker on the prospective of the UK registry – Swansea University
      • Jan Hillert & Mario Alberto Battaglia as discussants (Swedish registry and Italian Barcoding MS Initiative) – Karolinska Institutet and Italian MS Society
      • Paolo Cortesi as Researcher (PROMOPROMS case study) – University Bicocca Milan, PROMS WG4

      PROMS Plenary Event 2023

      Session 4 – The opportunity of digital PRO measurement: myth or reality?

      Moderator: Hans-Peter Hartung | HHU Düseldorf

      The session included: 

      • Liesbet Peeters as Researcher (PROMS eHealth catalogue) – Hasselt University, PROMS WG3
      • Letizia Leocani as Speaker on the EU-funded Mobilise-D project – San Raffaele University; CC Igea, Milan
      • Luca Capezzuto & Loïc Carment as Industry Representatives – Roche & Ad Scientiam
      • Guy Peryer for Patient Perspective on the use of digital techs – ECT Representative

        PROMS Plenary Event 2023

        Session 5 – Building on the outcomes of the PROMS Plenary event: the Regulatory Agency’s perspective

        Moderator: Patrick Vermersch |Université de Lille

        The session included: 

        • Kaisa Immonen | European Medicines Agency (EMA)

          PROMS Plenary Meeting 2022

          “Ensuring representativeness of PRO assessment”

          Giancarlo Comi| European Charcot Foundation

          Helga Weiland| South Africa MS Society

          Peer Baneke| MS International Federation

          The PROMS Initiative: setting the scene

          Patrick Vermersch| Université de Lille

          Paola Zaratin| Italian MS Society

          PROMS Plenary 2022

          Moderator: Gilles Edan | Centre Hospitalier Universitaire de Rennes

          The collection and use of PROs in MS clinical care: preliminary results from Working Group 2 literature review by Robert McBurney | Accelerated Cure Project for MS;

          What is happening in clinical practice has to be related to what is happening in clinical trials? How? by Paul Kamudoni | Merck Healthcare KGaA;

          Uptake of PROMS in healthcare decision making at system level: early results from the WG4 field study by Usman Khan | Katholieke Universiteit Leuven  

          PROMS Plenary 2022

           

          Moderator: Mario Alberto Battaglia | Italian MS Society

          Keynote Speech

          Equity, diversity and inclusion in PRO data collection: MS as a case study by Samantha Cruz Rivera | Centre for Patient Reported Outcomes (University of Birmingham)   

          PROMS Plenary 2022

          Round table: How can we boost participation and increase representativeness of PROMS for people with MS and underserved groups?

          Moderator: Anne Helme|MS Internation Federation

          Keynote Speech

          Helga Weiland|South Africa MS Society
          Joanna Dronka-Skrzypczak|PROMS Engagement Coordination Team Susanna van Tonder|PROMS Engagement Coordination Team
          Emma Gray|PROMS Engagement Coordination Team
          Guy Peryer|PROMS Engagement Coordination Team
          Ainhoa Ruiz Del Agua|PROMS Engagement Coordination Team Angela White|PROMS Engagement Coordination Team
          Michael Thor|MS International Federation
          Anneesa Amjad|UK MS Society

          PROMS Plenary 2022

          How to address the gaps in existing PROMS                          

          Researching, Developing and Validating new PROMS by Giampaolo Brichetto|Italian MS Society

          The “MyMood” case study by Ludovico Pedullà|Italian MS Society

          The regulatory framework: FDA/regulatory authorities’ perspective and actions by Timothy Coetzee|United States MS Society Q&A

          PROMS Plenary 2022

          Moderator: Robert Hyde|Independent Healthcare industry Consultant

          The PROMS eHealth catalogue: preliminary outcomes from the WG3 landscape analysis by Letizia Leocani|University Vita-Salute San Raffaele

          The ALAMEDA project: leveraging AI to bridge the early diagnosis and treatment gaps in brain diseases by Rachele Paolucci|Italian MS Society

          The potential of digital PROMS to make patient input reliable and help measure domain interdependencies. Myth or reality?
          by Johan van Beek|Biogen and Licinio Craveiro|Roche