Working group 1
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.
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