Development and Use of the iConquerMS Research Network for Patient-Centered Research
iConquerMS™ is a novel MS patient-powered research network, created to promote patient-centered research and to engage people with MS and researchers in conducting studies on topics important to the MS community. iConquerMS™ is sponsored by Accelerated Cure Project, an advocacy organization that creates resources to catalyze collaborative research, in partnership with Arizona State University and Feinstein Kean Healthcare. iConquerMS™ is a member of PCORnet, a linked group of PCORI-funded research networks incorporating health data from 10s of millions of people across the US.
One year after the initial launch of iConquerMS™, our objectives focus on the development and initiation of research studies:
- Develop and conduct studies based on topics suggested by people with MS who are iConquerMS™ members
- Engage with MS researchers who are interested in using the iConquerMS™ data and biosample platform to further their goals; facilitate community input into their studies and obtain data and samples needed for their research
- Disseminate information such as network population data and research findings to network members
- Serve as a conduit and source of expertise for MS researchers seeking to access data from the 13 PCORnet clinical data research networks representing over 100 US healthcare provider systems
Research topics that are of high priority to the MS community are solicited by a variety of means including web-based mechanisms and meetings/events. Collaborations with MS researchers are initiated through various outreach methods, and materials are provided to support inbound contacts. Study proposals are solicited, developed, and approved through processes that incorporate input from iConquerMS™ participants and ensure scientific rigor and feasibility.
As of December 2015, iConquerMS™ has submitted or collaborated on 14 letters of intent and full submissions for proposed projects involving the iConquerMS™ network. Three surveys of the full network (currently numbering over 2600 members) were conducted to collect data in support of these applications. Submissions of research topics made by people with MS via iConquerMS.org and 4 regional meetings have been analyzed and a pilot study to investigate a high-priority topic is in progress. Initial biosample collection is underway.
Our experience with iConquerMS™ indicates that people with MS are enthusiastic about contributing their health data and biosamples to enable research, and contributing their ideas and intelligence to shape the research agenda and guide individual studies. Researchers are likewise interested in obtaining access to a platform that provides them with data, biosamples, and knowledgeable input from people with direct experience with MS. The iConquerMS™ platform represents a bridge connecting people with MS and the research community, and its research studies will enable insights into a wide variety of topics.