In a press release, lead author on the paper, Prof Alan Thomposon MD said “The publication of this paper is an important step toward a more coordinated, global approach to tackling challenges and realizing opportunities for improving quality of life for people living with progressive MS,”
Biological differences are thought to exist between relapsing and progressive types of MS types with active inflammation thought to cause relapsing-remitting symptoms and progressive neurodegeneration (nerve cell damage) driving progressive MS.
The international Progressive MS Alliance first published a strategy in 2012 aimed at improving care for progressive MS. Since then, numerous changes have taken place in the field including the introduction of treatments for progressive MS, both secondary progressive MS (SPMS) and primary progressive MS (PPMS). Researchers said the addition of these types of agents to the clinician’s toolbox “signals a hopeful start to a potential new therapeutic era.”
Lack of clear criteria to determine when someone has converted from RRMS to SPMS was highlighted as a clinical challenge which needs improvement. Another challenge noted was finding a reliable way to evaluate the usefulness of rehabilitation and symptom management strategies.
The team also noted that currently available medications tackle inflammation, but said “if we are to have a major impact on progression we need to develop agents that provide neuroprotection and/or encourage repair.”
To address the gaps in progressive MS care, the researchers highlighted three areas that require “renewed focus and effort.” These include the biological mechanisms that underlie disease progression; the need to accelerate progressive MS clinical trials and improving wellbeing for people living with progressive MS.
First, they stressed the importance of further studies to understand the biological mechanisms that underlie disease progression in MS, crucial to identifying viable therapeutic targets.
The researchers also stressed the importance of including people living with MS in the research process, saying “Engaging people with progressive MS, as a key stakeholder, in research and measuring impact on outcome that matter most to them, will give research the direction to make all the relevant stakeholders co-accountable for social and wellbeing needs related to progressive MS,”
They added that this involvement “can take many forms, such as inclusion of people with MS in establishing research agendas, contributing to design of clinical trials, planning for and communicating research results, and informing funding decisions and/or other parts of the research continuum.”
The proposal is available to read here: https://journals.sagepub.com/doi/full/10.1177/13524585211059766