iConquerMS™ Research Survey
iConquerMS™ is a national initiative by and for those living with MS, and those who are otherwise affected by the disease.  It aims to drive a new generation of patient-powered research into the origins, symptoms, progression, and treatment of the disease and other topics important to people with MS.  iConquerMS™ is funded by the Patient-Centered Outcomes Research Institute (PCORI), a nonprofit organization established by the United States Congress in 2010.

Our goal is to recruit 20,000 people living with MS to join this initiative at the portal called www.iConquerMS.org, to be launched in late November 2014.  Recruitment will be US-focused and will seek to ensure that the membership of iConquerMS™ reflects the diversity of the MS population in the US. Participants in other countries will also be welcome to join.

Registered iConquerMS™ participants will securely and privately complete validated research instruments on various topics, and will be asked to obtain and upload their Electronic Health Records to the portal.  The iConquerMS.org portal has been reviewed and approved by an IRB, and informed consent will be obtained from all registered participants. Data gathered at the portal will include basic demographics, personal and family history of MS, treatments, symptoms, and other patient-reported outcomes.

People living with MS will have the opportunity to pose research questions of interest to them. Researchers will be able to request access to and analyze the data collected through iConquerMS™ and will be encouraged to work with the iConquerMS™ team to present potential new surveys to gather data of importance to emerging research questions.

Please take a few minutes to tell us about yourself and how iConquerMS™ can be of value to your research.  

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Name
Degree/Credentials
Affiliation
Country *
Sector (check all that apply) *
Required
Role: (check all that apply) *
Required
Research Areas of Interest (check all that apply) *
Required
What kind(s) of research question(s) would you be interested in using iConquerMS™ data to investigate? *
Beyond analyzing data collected through iConquerMS™, are there other ways in which you could envision using iConquerMS™ in your research? (For example, conducting a clinical trial with iConquerMS™ participants, analyzing biosamples collected from iConquerMS™ participants.) *
Are there ways in which you could envision using iConquerMS™ in education or patient care? *
Would you have any concerns about any aspect of using iConquerMS™ in your research? Please describe. *
 Do you have experience using patient-reported information in your research? *
Required
Please list any patient registries you may have used in your MS research: *
Have you experienced any challenges in using patient-reported data in the past? If so, please describe. *
Would you be interested in speaking with our project team to further discuss the use of iConquerMS™ in research and how it could be most helpful to you? *
Required
Would you like to be added to our mailing list to receive periodic updates about iConquerMS™? *
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Email address
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