Two groups working to collect and promote patient-reported outcomes (PROs) in research and treatment for multiple sclerosis (MS) announced they will jointly explore ways to “standardize and harmonize” these measures so as to make them more effective.
The effort brings the iConquerMS People-Powered Research Network, managed by the nonprofit Accelerate Cure Project for MS, together with the Italian Multiple Sclerosis Society, which opened the PROMOPRO-MS database in 2013. Both work in PROs through these databases, with a goal of bettering patient health, treatment and the quality of life.
iConquerMS started in 2014 as a research initiative led by and for individuals with MS who wish to contribute with ideas and health data. The network was established with the help of Accelerated Cure Project in partnership with Feinstein Kean Healthcare and Arizona State University.
The iConquerMS initiative is supported by the Patient-Centered Outcomes Research Institute (PCORI), as part of PCORnet, PCORI’s national patient-centered clinical research network.
With a goal of standardizing the process of capturing the entire experience of symptoms, abilities, and quality of life among MS patients, the initiative aims to contribute to the growing interest in shared treatment decision-making in MS through the inclusion of PROs.
“As a person living with MS who experiences many debilitating symptoms that are not routinely collected in a standardized form at or between clinic visits, nor in clinical trials for new MS medicines, I am excited by the prospect that this collaboration will bring the outcomes that matter most to people affected by MS into every aspect of my care and in research to improve treatments,” Laura Kolaczkowski, co-principal investigator of the iConquerMS People-Powered Research Network and a columnist for Multiple Sclerosis News Today, said in a press release.
Despite many advances, the MS community still faces challenges in choosing among treatments, from ready access to the benefit-risk profiles of disease-modifying therapies to better understanding of treatment effects on disease symptoms and disabilities.
A large number of PRO survey instruments and published PRO data exist for MS, but their use has varied widely, diminishing their effectiveness. The partners look to bring greater coherence to data collection and interpretation for both MS research and healthcare decision-making.
Through appropriate standardization of PRO measures, their goal is to incorporate the patient voice in MS research, care, and drug development.
“This collaboration aims to establish a system and tools for the collection, presentation and interpretation of patient-reported health information and outcomes for MS, in culturally-appropriate ways, across countries for use in research and in shared healthcare decision-making,” said Giampaolo Brichetto, principal investigator of the PROMOPRO-MS database at the Italian MS Society.
“Standardizing, and harmonizing the use of a core set of PRO measures for MS across countries and cultures will ultimately enable patients, physicians, regulatory agencies, and other stakeholders to ‘speak the same language’ worldwide about the entire experience of MS beyond standard clinical assessments,” said Robert McBurney, co-principal investigator of the iConquerMS network and chief executive officer of the Accelerated Cure Project.
According to Paola Zaratin, scientific director for the Italian MS Society, possible results of this collaboration include “important insights to advise Regulatory Agencies and the other stakeholders on an appropriate patient-reported outcome core dataset to be collected and included in MS registries and beyond.”
