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ACP and our partners are excited to announce the launch of iConquerMSTM, a ground-breaking initiative that empowers people with MS to help drive MS research and accelerate efforts toward improving treatments and finding a cure for MS.
Through iConquerMS.org, the initiative’s online portal, people with MS will be able to participate in and help drive research by:
- Safely and securely providing personal health information through the completion of surveys and the contribution of Electronic Health Records
- Setting the research agenda for studies performed using network data by submitting research questions on topics of interest to them
- Connecting and sharing experiences with other people in the MS community
Our hope is that people with MS will be eager to join this cutting-edge network because it is only through more involvement of the entire MS community that we can better accelerate efforts toward improving treatments and finding a cure.
Please visit iConquerMS.org for more information and to register for the initiative.
More about this initiative
The initial funding for iConquerMSTM is provided by the Patient-Centered Outcomes Research Institute (PCORI), an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. For more information about PCORI funding, visit http://pcori.org/funding-opportunities.
iConquerMSTM is one of 29 health data networks that will form PCORnet: the National Patient-Centered Clinical Research Network, a new national resource that aims to boost the efficiency of health research. PCORI envisions PCORnet to be a secure, national data network that improves the speed, efficiency, and use of patient-centered comparative effectiveness research (CER).
By integrating data available in the 29 individual networks, PCORnet aims to provide access to a large amount of diverse, nationally representative health information that can support a range of study designs. It will 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.
iConquerMSTM was selected for PCORnet through a competitive review process in which patients, caregivers, and other stakeholders joined scientists to evaluate the proposals. Applications were assessed for the capacity of their network to collect complete, comprehensive clinical data, how well they will engage patients and other stakeholders, and their ability to maintain data security and patient privacy among other criteria.
By the end of our 18-month award, we expect that iConquerMS.org will be actively used by more than 20,000 people with MS, or 5% of the estimated MS population in the United States. To achieve this goal, we will:
- Work closely with MS advocacy organizations, such as the MS Coalition, who have agreed to invite their members
- Engage our existing ACP Repository network of more than 3,200 participants
- Drawn upon our relationships with 60 research teams and MS specialty clinics nationwide
- Work with other MS clinics and community neurologists interested in forwarding our cause
To build iConquerMSTM and iConquerMS.org, ACP is collaborating with the following organizations:
- Complex Adaptive Systems Initiative at Arizona State University
Complex Adaptive Systems Initiative (CASI) is a program within Arizona State University that leverages trans-disciplinary relationships to address complex global challenges in health, sustainability, security, and education by creating entirely new technologies and novel solutions. This requires integration of diverse research disciplines across the University and building an extended network of global collaborations.
- Feinstein Kean Healthcare
Feinstein Kean Healthcare (FKH) is a leading strategy and communications partner for emerging and established organizations whose innovations are helping to transform life sciences and healthcare. The firm works with clients at the intersection where disruptive technologies and ideas influence medicine, clinical research and practice, business models, public policy, and public opinion and behaviors.
Visit iConquerMS.org to learn more and join the initiative.