Columns The MS Wire - A Column by Ed Tobias MS Advocates Hope Better Data Will Mean Better Care MS Advocates Hope Better Data Will Mean Better Care by Ed Tobias | March 10, 2017 Share this article: Share article via email Copy article link The practice of collecting data about how we MS patients go about living our lives, and then using that data to improve our patient care, seems to be gathering steam. In the European Union a projectĀ called Real World Evidence Data, or RWE, is working outside of the traditional clinical research box, hoping to provide MS patients with faster access to therapies that are safer and more efficient. It also is hoped this data will give patients greater input into the regulation and pricing of medicines. āReal world evidence data already supports patient advocates but also regulators, payers and researchers to find answers for many key questions,” says European Parliament MemberĀ Cristian BuČoi. BuČoi and the European Multiple Sclerosis Platform (EMSP) recently co-sponsored a conference on RWE. “RWE can give an indication on whether work-focused MS therapies are cost-effective and ultimately bring a societal contribution,ā he says. Multiple data sources across multiple countries To accomplish this, researchers with the EMSPĀ are working to extract data from physicians’ practices, prescription data bases, patient registries and social media. Their hope is to build a data collection network that will be aĀ one-stop provider of MS patient data, across multiple EU countries, in areas where national data collection does not provide sufficient depth. Ā For example, data about the cost of illness is being studied by health economist Gisela Kobelt. The studyĀ involves 17,000 MS patients from 16 European countries. It’s hoped that data such as this will help drive regulatory decisions about multiple sclerosis treatments. You can see PowerPoints of some of the presentations at the RWE conferenceĀ here. iConquerMS A somewhat similar effort is underway in the U.S. by a group called the Accelerated Cure Project for MS. It’s goal is to allow patients to have a greater impact on treatments for the disease. It, too, collects data, but it gathers it directly from patients via its website, iConquerMS.org. On this secure site, patient volunteers (I’m one of them) provide information about things such as how well they sleep, their social activities and the therapies they use. This data then can be used to determineĀ which drugs and supplements work best for which people, which symptoms have the biggest impact on quality of life, or what people with MS can expect from making lifestyle changes. iConquerMS is supported by many top MS organizations, including the National Multiple Sclerosis Society, the Multiple Sclerosis Association of America, the Multiple Sclerosis Foundation, and Can Do MS. āUnderstanding the MS experience from the patientās perspective is vital to improving the care of people with MS and to creating effective treatment paradigms,ā according to the National MS Society’s Timothy Coetzee, PhD, on the project’s website.Ā You can find more info about iConquerMS in a columnĀ I wrote several months ago. There’s power in data. These two programs are making a good start at lassoing it for the benefit of all of us who live with MS. Note:Ā Multiple Sclerosis News TodayĀ is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those ofĀ Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis. Ā Print This Page About the Author Ed Tobias People say to write what you know and Ed Tobias knows about MS. He's lived with the illness since 1980, when he was 32 years old. Ed's a retired, award-winning broadcast journalist and his column combines his four decades of MS experiences with news and comments about the latest in the MS community. In addition to writing his column, Ed is one of the patient moderators on the MS News Today Facebook, Twitter, and Instagram sites. Heās also the author of āThe Multiple Sclerosis Toolbox: Hints and Tips for Living with M.S.ā Ed and his wife split their time between the Washington, D.C. suburbs and Floridaās Gulf Coast, trying to follow the sun. Tags iConquerMS, MS, multiple sclerosis Comments Laura Kolaczkowski Thanks for highlighting this research effort - getting the word out is the most difficult part of what we are doing with iConquerMS, and articles such as yours as so helpful in bringing awareness. Laura, iConquerMS co-investigator. Reply Leave a comment Fill in the required fields to post. Your email address will not be published. Your Name Your Email Your Comment Post Comment
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