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iConquerMS™ Seeks People with MS to Create Patient-Powered Research Network

March 25, 2015

iConquerMS™ is seeking to create a patient-powered research network that includes at least 20,000 people with MS who contribute data on their health and other topics. Survey data will be made available to research scientists who are studying MS and similar diseases. Through the iConquerMS.org website/portal, people living with MS submit large amounts of health data that can be used by researchers to find patterns that might not be visible otherwise. These patterns and insights may help researchers figure out the causes of MS, determine who will respond best to various therapies, and find new, improved treatments for the disease.

The initial 18-month funding for iConquerMS is provided by the Patient-Centered Outcomes Research Institute (PCORI), an independent, nonprofit organization authorized by Congress in 2010. PCORI seeks to determine the best healthcare options for each individual using “Patient-Centered Outcomes Research” – research that addresses the questions and concerns most relevant to patients, and involves patients, caregivers, clinicians, and other healthcare stakeholders, along with researchers, throughout the process.

How to Join
Registration involves three steps:
• Agree to Informed Consent: Understand the initiative before joining. Read about the informed consent and privacy policy of iConquerMS and learn what your role will be.
• Enter an email address: You will receive a confirmation link. Clicking on the provided link continues the registration process.
• Complete Your Profile: Participants can enter the iConquerMS member section after creating a password, and providing a few quick personal details.

Read more about joining iConquer MS

The Study
iConquerMS provides access to a series of online surveys. Each survey focuses on a specific topic, such as medical history, reproductive health history, diet and exercise, and other areas of health and well-being. Some questions are repeated over time to track changes.

Participants may monitor their own health history in comparison to the aggregate iConquerMS membership. In the future, the iConquerMS website will have the capacity to allow individuals to submit electronic medical records as well. Data obtained through these activities will become part of participants’ research data.

iConquerMS relies on those with MS not only to contribute their health information, but to provide their ideas for research topics and questions to move research in directions that are important to them. That means that participants will have the power to influence what types of research are conducted through  iConquerMS. The Research Committee, one of the site’s oversight committees, reviews all the questions and research topics submitted and develops study plans for the top priority research areas.

Data is provided to investigators conducting research on MS and other diseases. Researchers who want access to this information will be asked to submit a written request that will be reviewed by the Research Committee for scientific merit, the ability to increase the knowledge of MS and similar diseases, and adherence to the consent form.

Confidentiality
A limited number of authorized personnel at Accelerated Cure for MS have access to participant contact information. Before sharing health information with researchers, all information that identifies participants directly will be removed. iConquerMS takes industry-standard physical and electronic technical precautions to protect the information shared by individuals with MS.

You are the Key to Success!
The iConquerMS initiative enables the collection of large amounts of information required for research asking essential questions about MS. iConquerMS is driven by individuals with MS, and is informed by their input and ideas. But iConquerMS will only succeed if thousands of people living with MS participate!

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About Multiple Sclerosis

Multiple sclerosis is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. Symptoms range from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are leading to better understanding and moving us closer to a world free of MS. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. MS affects more than 2.3 million people worldwide.

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