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iConquerMS™ - A Patient-Powered Research Network for Multiple Sclerosis (iCMS)

The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Know the risks and potential benefits of clinical studies and talk to your health care provider before participating. Read our disclaimer for details.
 
ClinicalTrials.gov Identifier: NCT02486562
Recruitment Status : Recruiting
First Posted : July 1, 2015
Last Update Posted : July 5, 2019
Sponsor:
Collaborators:
Patient-Centered Outcomes Research Institute
Olgilvy
Arizona State University
Information provided by (Responsible Party):
Accelerated Cure Project for Multiple Sclerosis

Brief Summary:
iConquerMS™ is a research initiative developed by and for people with multiple sclerosis (MS) to contribute their health data and ideas to advance and accelerate research into MS.

Condition or disease
Multiple Sclerosis

Detailed Description:

The purpose of this study is to create a Multiple Sclerosis Patient-Powered Research Network (MS-PPRN) that includes at least 20,000 people with multiple sclerosis (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. Our goal is to use this data to answer questions that researchers and people with MS have regarding the disease, including its causes, treatments, and other topics.

The MS-PPRN will be part of a national network for conducting research called PCORnet, the National Patient-Centered Clinical Research Network. PCORnet is supported by the Patient-Centered Outcomes Research Institute (PCORI). As the MS-PPRN is part of PCORnet, the data collected in surveys you complete may also be shared with researchers studying other diseases within the PCORnet network.

While the MS-PPRN is focused on enrolling people with MS, people without MS are also welcome to participate in this research study.

This study will be conducted online via the iConquerMS.org website. This is an ongoing study and will last for an indefinite period of time.

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Study Type : Observational
Estimated Enrollment : 20000 participants
Observational Model: Cohort
Time Perspective: Other
Study Start Date : November 2014
Estimated Primary Completion Date : October 2026

Resource links provided by the National Library of Medicine


Group/Cohort
People diagnosed with Multiple Sclerosis



Primary Outcome Measures :
  1. Number of people with multiple sclerosis who experience health-related quality-of-life changes [ Time Frame: 1 year ]


Information from the National Library of Medicine

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided below. For general information, Learn About Clinical Studies.


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Ages Eligible for Study:   21 Years and older   (Adult, Older Adult)
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   Yes
Sampling Method:   Non-Probability Sample
Study Population
Anyone 21 years of age or older is welcome to participate. Primary cohort is people with multiple sclerosis.
Criteria

Inclusion Criteria:

  • 21 years of age or older at the time of informed consent.

Exclusion Criteria:

  • Unwilling or unable to provide informed consent.

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT02486562


Contacts
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Contact: Sara Loud, MSEE, MBA 781-487-0032 sloud@acceleratedcure.org

Locations
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United States, Massachusetts
Accelerated Cure Project Recruiting
Waltham, Massachusetts, United States, 02451
Contact: Sara Loud, MS, MSEE    781-487-0032    sloud@acceleratedcure.org   
Sponsors and Collaborators
Accelerated Cure Project for Multiple Sclerosis
Patient-Centered Outcomes Research Institute
Olgilvy
Arizona State University
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Responsible Party: Accelerated Cure Project for Multiple Sclerosis
ClinicalTrials.gov Identifier: NCT02486562    
Other Study ID Numbers: ACP-MS-PPRN-001
First Posted: July 1, 2015    Key Record Dates
Last Update Posted: July 5, 2019
Last Verified: July 2019
Keywords provided by Accelerated Cure Project for Multiple Sclerosis:
Multiple Sclerosis
MS
Additional relevant MeSH terms:
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Multiple Sclerosis
Sclerosis
Pathologic Processes
Demyelinating Autoimmune Diseases, CNS
Autoimmune Diseases of the Nervous System
Nervous System Diseases
Demyelinating Diseases
Autoimmune Diseases
Immune System Diseases