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:
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- 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:
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- 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
SESSION 1: Barriers and current limits in PROMS collection and use
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
SESSION 2: Challenges: the patient perspective
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
SESSION 2: Challenges: the patient perspective
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
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
SESSION 4: Digital PROMS: the future of remote monitoring and self-management
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