Videos & Interviews
Plenary Event 2023 - Welcome Session
Plenary Event 2023 - Session 01
A Leap Towards Humanism in MS Research and Care
The session included:
Giancarlo Comi | European Charcot Foundation
Peer Baneke | MS International Federation
Helga Weiland | co-leader PROMS Engagement Coordination Team
Paola Zaratin | Italian MS Society
Role of PROMs and patient-generated data in unmasking “unrecognized” progresion
Moderator: Xavier Montalban|Cemcat HU Val d’Hebron
The session included:
Angela White|Engagement Coordination Team representative
Valerie Block as Keynote Speaker on Unrecognized Progression|University of California San Francisco (UCSF)
Paul Kamudoni|Merck
Per Soelberg Sørensen & Daniel Ontaneda|University of Copenhagen & Cleveland Clinic Foundation
Helga Weiland|Engagement Coordination Team Co-Chair
A Leap Towards Humanism in MS Research and Care
Plenary PROMS Event 2023The session included the opening presentation by Giancarlo Comi (European Charcot Foundation) and Peer Baneke (MS International Federation) and the speeches by Helga Weiland (co-leader PROMS ECT) and Paola Zaratin (Italian MS Society)
Role of PROMs and patient-generated data in unmasking “unrecognized” progresion
Plenary PROMS Event 2023Moderator: Xavier Montalban|Cemcat
The session included:
Angela White|ECT representative
Valerie Block as Keynote Speaker: Unrecognized Progression|University of California San Francisco
Paul Kamudoni|Merck
Per Soelberg Sørensen & Daniel Ontaneda
University of Copenhagen & Cleveland Clinic Foud.
Helga Weiland|ECT Co-Chair
Valuing the experiential knowledge of people living with the disease
Plenary PROMS Event 2023Moderator: Mario Alberto Battaglia|Italian MS Society
The session included:
Giampaolo Brichetto | Italian MS Society
Susanna van Tonder | ECT representative
Patricia Moghames | EMSP
Paul Kamudoni | Merck
Maria Pia Sormani |University of Genoa
Lessons learnt from existing PROMs
Plenary PROMS Event 2023Moderator: Timothy Coetzee|US MS Society
The session included:
Robert McBurney | Accelerated Cure Project
Jeremy Hobart | University of Plymouth
Rod Middleton | Swansea University
Jan Hillert & Mario Alberto Battaglia | Karolinska Institutet & Italian MS Society
Paolo Cortesi | University Bicocca Milan
The opportunity of digital PRO measurement: myth or reality?
Plenary PROMS Event 2023Moderator: Hans-Peter Hartung | HHU Düseldorf
The session included:
Liesbet Peeters | Hasselt University
Letizia Leocani | San Raffaele University Milan
Luca Capezzuto | Roche
Loïc Carment | Ad Scientia
Guy Peryer | ECT Representative
The opportunity of digital PRO measurement: myth or reality?
Plenary PROMS Event 2023Moderator: Hans-Peter Hartung | HHU Düseldorf
The session included:
Liesbet Peeters | Hasselt University
Letizia Leocani | San Raffaele University Milan
Luca Capezzuto | Roche
Loïc Carment | Ad Scientia
Guy Peryer | ECT Representative
Interviews series
Giampaolo Brichetto – WG1 Co-LeaderClinical Director at Italian MS Society and President of the European network for MS Rehabilitation. (RIMS), is co-leader in Working Group 1. The group’s focus is on researching, validating, and developing Patient Reported Outcomes (PROs) in the field of Multiple Sclerosis.
Interviews series
Robert McBurney – WG2 Co-LeaderChief Research Officer of Accelerated Cure Project for Multiple Sclerosis (APC), a national non-profit organization dedicated to accelerating efforts toward a cure for MS by rapidly advancing research that determines its causes and mechanisms, is one of the co-leaders of the Clinical Management Working Group (WG2) of PROMS Initiative.
Interviews series
Robert McBurney – WG2 Co-LeaderChief Research Officer of Accelerated Cure Project for Multiple Sclerosis (APC), a national non-profit organization dedicated to accelerating efforts toward a cure for MS by rapidly advancing research that determines its causes and mechanisms, is one of the co-leaders of the Clinical Management Working Group (WG2) of PROMS Initiative.
Plenary Event 2023 - Session 02
Plenary Event 2023 - Session 03
Valuing the experiential knowledge of people living with the disease
Moderator: Mario Alberto Battaglia|Italian MS Society
The session included:
Giampaolo Brichetto | Italian MS Society
Susanna van Tonder | Engagement Coordination Team representative
Patricia Moghames | European Multiple Sclerosis Platform
Paul Kamudoni | Merck
Maria Pia Sormani |University of Genoa
Lessons learnt from existing PROMs
Moderator: Timothy Coetzee|United States MS Society
The session included:
Robert McBurney | Accelerated Cure Project
Jeremy Hobart | University of Plymouth
Rod Middleton | Swansea University
Jan Hillert & Mario Alberto Battaglia | Karolinska Institutet & Italian MS Society
Paolo Cortesi | University Bicocca Milan
Plenary Event 2023 - Session 04
Plenary Event 2023 - Session 05
The opportunity of digital PRO measurement: myth or reality?
Moderator: Hans-Peter Hartung | HHU Düseldorf
The session included:
Liesbet Peeters | Hasselt University
Letizia Leocani | San Raffaele University; CC Igea, Milan
Luca Capezzuto & Loïc Carment | Roche & Ad Scientiam
Guy Peryer | ECT Representative
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 Initiative series interview
PROMS Initiative series interview
Giampaolo Brichetto – WG1 Co-Leader
Clinical Director at Italian MS Society and President of the European network for MS Rehabilitation. (RIMS), is co-leader in Working Group 1 of the PROMS Initiative. The group’s focus is on researching, validating, and developing Patient Reported Outcomes (PROs) in the field of Multiple Sclerosis (MS)
Robert McBurney – WG2 Co-Leader
Chief Research Officer of Accelerated Cure Project for Multiple Sclerosis (APC), a national non-profit organization dedicated to accelerating efforts toward a cure for MS by rapidly advancing research that determines its causes and mechanisms, is one of the co-leaders of the Clinical Management Working Group (WG2) of PROMS Initiative.
PROMS Initiative series interview
PROMS Initiative series interview
Letizia Leocani – WG3 Co-Leader
Associate professor of neurology in Milan (Università Vita-Salute San Raffaele) with expertise in technologies for monitoring and rehabilitation of people with Multiple Sclerosis, is one of the co-leaders of the eHealth Working Group (WG3) within the multi-stakeholder PROMS Initiative.
Usman Khan – WG4 Co-Leader
Professor at Katholieke Universiteit Leuven and co-chair of PROMS Initiative Working Group 4. This group focuses on how PROMS can be integrated into policy-making processes, which is a relatively new space. Usman’s role is to understand stakeholder groups’ understanding of PROMS and to connect that to determine their interest in using PROMS for policymaking processes
Unlocking the Hidden Aspects of Multiple Sclerosis: Interview with Prof. Daniel Ontaneda
#WorldMSDay
Exploring Beyond the Surface of MS Diagnosis and Management
An enlightening conversation with Prof. Ontaneda, where we delve into the complexities of Multiple Sclerosis (MS). Discover the importance of recognizing the “hidden” symptoms such as fatigue and cognitive decline, often overlooked in standard care. Learn about the transformative potential of Patient-Reported Outcome Measures (PROMs) and digital technologies in enhancing the detection and management of MS, paving the way for a future of personalized and effective patient care.
Ainhoa Ruiz Del Agua – ECT member
The patient plays a key, central, and constructive role within the PROMS Initiative. This was one of the most significant passages of the speech by Ainhoa Ruiz Del Agua, a member of the Engagement Coordination Team (ECT), who described, during the conference promoted by the Eugenia Epalza Fundazioa (Esclerosis Multiple Euskadi) within the framework of the #WorldMSDay last 30th May, her first-hand experience and the next steps in the field.
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