Research, Development and Validation

𝗪𝗚𝟭 (𝗥𝗲𝘀𝗲𝗮𝗿𝗰𝗵, 𝗗𝗲𝘃𝗲𝗹𝗼𝗽𝗺𝗲𝗻𝘁 𝗮𝗻𝗱 𝗩𝗮𝗹𝗶𝗱𝗮𝘁𝗶𝗼𝗻) seeks to identify and validate the most important functional domains in PROs for people with MS via participatory methods.

It establishes a clear roadmap toward prioritisation of PROMs and whether new measures are needed. 

A survey co-created with patients

The PROMS initiative conducted a Global Survey for PwMS, offering a unique opportunity to contribute to the advancement of new and improved patient-reported outcomes (PROs) by sharing their perspectives and experiences.

The results are expected to come in early 2024

Strategic objectives

  • To identify functional domains that matter most to people with MS that will lead to the prioritization of functional domains. 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

PROMS Initiative interview

Giampaolo Brichetto, 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.

Working Group 1 has conducted an exploratory review and is now about to launch a survey to determine the functional domains that are most important to people with MS and the gaps in PROs and functional domains.

Recent activities

  • Identification of interdependences in MS disease domains together with the ECT
  • Development of a research protocol for the realisation of a broad data collection survey directed at PwMS/clinicians/formal and informal caregivers
  • Development of a research protocol for Delphi study on MS-dedicated PROs with expert stakeholders