Results Summary

PCORI funded the development of PCORnet®, the National Patient-Centered Clinical Research Network, to make it easier and more efficient to conduct research. PCORnet is made up of Partner Networks that harness the power of large amounts of health data and patient partnerships.

Patient-Powered Research Networks (PPRNs) are networks operated and governed by patients, families, caregivers, and community members in close collaboration with clinical researchers, with the goal of shaping and conducting research to better serve their communities and improve their health outcomes. Several PPRNs, including iConquerMS, participated as Partner Networks in PCORnet.

PCORI funded iConquerMS’s participation in PCORnet from 2015 to 2018. This report outlines iConquerMS’s achievements in building its research infrastructure capacity to

  1. Create ways to involve patients, families, and caregivers in decision making about the network
  2. Create a way to collect and share data reported by patients for research
  3. Involve patients, caregivers, families, and communities in the research process, including recruiting people to participate in research studies
  4. Lead or join in research studies that focus on the community’s priorities

Network at a glance

iConquerMS is a PPRN focused on the needs of people with multiple sclerosis, or MS. MS is a disease that affects the brain and spinal cord. When people have MS, messages between the brain and body slow down, causing symptoms like muscle weakness, vision problems, trouble with balance and coordination, and difficulties thinking and remembering. No cure exists for MS, but treatments can improve symptoms and slow its progression.

Led by the Accelerated Cure Project for Multiple Sclerosis, iConquerMS connects people with MS, advocates, caregivers, doctors, and researchers. The primary goal of iConquerMS is to encourage and conduct research that reflects the priorities and concerns of people with MS. As of March 2019, the network included 4,920 people affected by MS. Partners Ogilvy and Ordinal Data, Inc., helped plan how the network would manage information and reach out to people interested in MS.

Title iConquerMS
Network design Patient-Powered Research Network (PPRN)
Lead partner Accelerated Cure Project for Multiple Sclerosis
Other partners Arizona State University
Ogilvy
Ordinal Data, Inc.
Participants 4,920
Area(s) of focus Multiple sclerosis

How does the network operate?

The iConquerMS network has enrolled 4,920 members. Of these, 80% are people with MS. The remainder are caregivers, family members, and others interested in MS. Information about patients for use in network research studies came from the patients themselves. They completed surveys and arranged for their health records and blood and other biological samples to be sent to researchers through the network or the Accelerated Cure Project for Multiple Sclerosis, which started a bank of MS biological samples in 2006. Patients gave their consent before this information was shared.

When people with MS signed up to join iConquerMS on its website, they took surveys that covered 

  • Basic information, such as age, sex, occupation, and marital status
  • When they were diagnosed
  • Type of MS
  • Overall health
  • Quality of life
  • Other health problems
  • Physical activity
  • Wellness and diet
  • Abilities and disabilities

The information provided by network participants could be used in other research studies. Researchers submitted online proposals to request access to information that had already been collected from iConquerMS participants. They could also request permission to collect new information or biological samples like blood and saliva.

Network participants submitted their own ideas for research through the Suggest a Research Question feature on the network portal. A committee reviewed these questions, and all network participants could comment through online surveys.

How did the network involve patients and other partners?

The network is led by a Governing Board, Research Committee, and Engagement Committee. These committees include people with MS, patient advocates, patients, doctors, and researchers. People with MS hold a majority of positions in the network.

The Governing Board approved policies and procedures, provided guidance to the management team, approved nominations to committees, and endorsed committee recommendations. 

The Research Committee scored research proposals based on the input people with MS had in developing the research plan and its potential to improve the health or quality of life of people with MS. In most cases, the network surveyed participants about their interest in the study, likelihood of participation, and suggestions to improve the studies. The Research Committee also reviewed all ideas submitted through the Suggest a Research Question feature on the network portal.

The Engagement Committee was responsible for recruiting, engaging, and retaining people affected by MS in the network.

Each year, iConquerMS held a two-day leadership summit. This meeting brought together iConquerMS leadership, patients, caregivers, researchers, advocacy partners, and representatives from the pharmaceutical industry. The 2018 summit focused on how to strengthen the network through collaborations.

Who is in the network?

As of March 31, 2019, iConquerMS included 4,920 participants. The network participated in 14 research studies.

Network participants diagnosed with MS could also participate in Research Engagement About Life with Multiple Sclerosis, or REAL MS, the network’s main research project. This study looks at the real-life experiences of people with MS. Twice a year, participants completed online surveys, so researchers could see how MS changes over time. Participants also suggested ideas for future surveys and could write about their lives in more detail.

Population (as of 03/31/19)

Race/ethnicity

  • 91% white
  • 5% mixed race
  • 3% black
  • 1% Asian
  • 4% Hispanic

Sex

  • 77% female
  • 23% male

How does the network support future research?

In 2018, the National Multiple Sclerosis Society agreed to support the iConquerMS website for three years. The network is partnering with the pharmaceutical industry, medical societies, and universities to continue patient-driven research.

More About This PCORnet: Patient Powered Research Networks (PPRN) Phase II

Project Information

Robert McBurney, BSc, PhD
Accelerated Cure Project for Multiple Sclerosis
$1,530,100
The Multiple Sclerosis Patient-Powered Research Network, iConquerMS™

Key Dates

March 2019
2015
2018

Study Registration Information

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Has Results
Project Status
Award Type
Research Priority Area
State

State

The state where the project originates, or where the primary institution or organization is located.

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Last updated: October 20, 2021