WG1
Research, Development and Validation
๐ช๐๐ญ (๐ฅ๐ฒ๐๐ฒ๐ฎ๐ฟ๐ฐ๐ต, ๐๐ฒ๐๐ฒ๐น๐ผ๐ฝ๐บ๐ฒ๐ป๐ ๐ฎ๐ป๐ฑ ๐ฉ๐ฎ๐น๐ถ๐ฑ๐ฎ๐๐ถ๐ผ๐ป) 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