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.
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.
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