The initiative will provide biopharma companies the opportunity to demonstrate the impact of their therapies on outcomes that matter most to individuals with MS. Food and Drug Administration (FDA) is helping to drive patient empowerment by preparing to incorporate new types of patient experience data and information into its benefit-risk framework for regulatory decision making. Incorporating patient input in drug development The goal is to reduce the time and effort needed to launch new studies and focus research on questions and outcomes especially useful to patients and those who care for them. IConquer MS is one of 31 health data networks that form PCORnet: The National Patient-Centered Clinical Research Network, a new national resource that aims to boost the efficiency and effectiveness of health research through patient involvement. The iConquerMS initiative is conducted through an on-line portal that allows people affected by MS to safely and securely provide personal health information through completion of surveys, set the research agenda for studies by submitting research questions of interest and connect and share experiences with other people in the MS community. iConquerMS takes patient empowerment to another level. This data return policy has helped expand the ever-growing wealth of MS patient information gathered from researchers who have leveraged data from the Repository.Īs healthcare turns to value-based care, there has been more of an emphasis on patients taking control of their own care – finding and evaluating providers when choosing medical services and being involved in care decisions. To date, more than 100 research teams have accessed the Repository and over half have returned datasets back with more on the way. The samples and data from the ACP Repository are available to any researcher with a sound research question with the requirement that all research results are returned to ACP for inclusion in the Repository database and for sharing with other researchers. One of the unique features of the both the ACP Repository and the iConquerMS initiative that is furthering the goal of data sharing is its data return policy. The governance of the initiative, including a governing board, research committee, and engagement committee is made up of a majority of people with MS and has helped to shape and decide what the initiative should look like, the types of survey questions they should be asking and the way in which information is presented.ĭata sharing and making data available is a significant topic of discussion in healthcare today and iConquerMS is opening new doors when it comes to making valuable data available to researchers. This unique approach to research is led by people with the disease. With its rich history of aggregating and data sharing, it’s no wonder that ACP used the funding to create iConquerMS, a people-powered research network of over 4,700 individuals with MS worldwide who contribute data, samples and expertise to drive research on topics they care about. It curates a repository that provides a uniquely valuable collection of thousands of datasets and bio samples as well as millions of data points that are available for the benefit of all researchers. ACP provides researchers with the resources to find ways to improve outcomes for people living with MS. The story of empowering patients with MS began four years ago when the Accelerated Cure Project for Multiple Sclerosis (ACP) obtained funding from the Patient Centered Outcomes Research Institute (PCORI). There is currently no cure for MS, but existing treatments can manage symptoms, lessen the frequency of relapses and slow the progression of the disease¹. ![]() Additionally, there are about 200 new cases diagnosed each week. are living with the disease, more than double the number reported in 1975. It can be diagnosed at any age, but it is diagnosed in most people between the ages of 20 and 50. MS is the most widespread disabling neurological condition of young adults around the world. Patients fighting against a growing disease iConquerMS is a ground-breaking initiative that empowers people with multiple sclerosis (MS) to help drive MS research and accelerate efforts toward improving treatments and finding a cure for the disease. Instead, those suffering from illness and disease must wait for researchers and clinicians to find and develop treatments and therapies that can provide a cure, treatment or relief.īut things are changing. Unfortunately, in healthcare, that’s not a reality for most patients. ![]() There’s an often-quoted adage that if you want something done right, do it yourself.
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