New National Research Initiative Gives People with Multiple Sclerosis a Voice in Research Aimed at Fighting the Condition

By Deborah Backus, PT, Ph.D., FACRM
Director of Multiple Sclerosis Research, Shepherd Center

I just spent a Saturday with a bunch of people who have multiple sclerosis (MS) and others interested in beating MS, and I am totally jazzed, pumped, whatever the term might be.

Why? Shepherd Center has always been committed to conducting meaningful research that can improve the lives of people with neurologic injury or disease, such as spinal cord injury, brain injury and MS. iConquerMS^™, the group with whom I spent the day, will help us accomplish that goal for people with MS in a very exciting new venture.

iConquerMS^™ is a new research initiative that uses patient-driven research to allow people with MS to actually have a say in the research that is being conducted to fight MS. As part of a national research network, called PCORnet, iConquerMS^™ will enable the secure collection of large amounts of health data, Big Data, from people living with MS.

Having the same data from large numbers of people allows researchers to see patterns and connections across the group rather than looking solely at individuals. This big data research in MS may help answer questions such as:

• What are important issues to people with MS?
• What causes MS and what strategies might prevent it, cure it, or arrest its progression?
• Which treatments work best in which individuals?
• What factors affect the progression of the disease?

Collaborative partnerships between people with MS, healthcare providers and researchers will help researchers ask better and more meaningful questions and establish ways to share their findings to improve care for people with MS. By working with people who have MS and gathering such large amounts of data, advances in research may happen faster.

As a person living with MS, your participation in iConquerMS.org is vital to advancing research in the field. Because you are unique, your data will be imperative in helping to define a pattern of disease progression and treatments that are most effective. iConquerMS^™ is secure, and you can privately enter your data and interact with other people living with MS and the researchers who hope to beat it. And for registered users, iConquerMS^™ will keep you informed, providing updates on how the data is used and describing the insights emerging from the research.

The following organizations came together to create iConquerMS^™

• Accelerated Cure Project for MS (ACP) – a patient-founded nonprofit organization dedicated to accelerating research efforts to improve diagnosis, optimize treatment and cure MS.
• Feinstein Kean Healthcare (FKH) – strategy and communications firm serving the life sciences and healthcare industries.
• Complex Adaptive Systems at Arizona State University (CAS @ ASU). CAS @ ASU develops and applies information technology to better collect, connect and enhance this transdisciplinary knowledge, resulting in entirely new technologies and solutions.

Additional iConquerMS^™ Support

In addition to the three partner organizations, iConquerMS^™ is supported by all major MS membership and advocacy organizations in the United States, including the National Multiple Sclerosis Society (NMSS), Multiple Sclerosis Foundation (MSF), Can Do Multiple Sclerosis, and the Multiple Sclerosis Association of America (MSAA). In addition, the Personalized Medicine Coalition supports the aims of iConquerMS^™.

Join us now. One person can make a difference. Go to iConquerMS.org. Help Shepherd Center and iConquerMS^™ researchers find out what we need to know about you to provide the best care and resources possible.

To learn more about MS research at Shepherd Center, click here.

DEBORAH BACKUS, PT, Ph.D., FACRM, is director of multiple sclerosis research at Shepherd Center. She has almost 30 years of experience as a rehabilitation clinician, educator and researcher. As part of the Eula C. and Andrew C. Carlos MS Rehabilitation and Wellness Program at Shepherd Center, Dr. Backus coordinates research efforts to study the health and wellness needs of people at varying stages of MS. In particular, her research centers on evaluating and improving rehabilitation and exercise interventions available to people with moderate to severe MS. Her research focus combined with her clinical experience has fueled a passion for facilitating the translation of medical evidence into practice, including influencing clinicians, payers for reimbursement of evidence-based interventions and policymakers related to health policy. Dr. Backus has presented both nationally and internationally, and has also published related to this work.