Newswise — WALTHAM, Mass., Nov. 16, 2023 /PRNewswire/ -- Accelerated Cure Project (ACP) for Multiple Sclerosis (MS) has expanded its iConquerMS™ Patient-Powered Research Network to include caregivers to people with MS. The new arm of iConquerMS will include a new website and research program that focuses specifically on the needs, preferences, and insights of MS caregivers.
The most common symptoms of MS are fatigue, visual disturbances, altered sensations, cognitive challenges, and difficulties with mobility, meaning that most of the more than 2.8 million people living with MS need support at some stage following their diagnosis. As a result, a substantial number of partners, parents, extended family members, and friends care for a loved one with MS, aiding with everything from managing and administering medications to the most basic tasks of daily living. The progressive and long-term nature of MS means that MS caregivers take on a responsibility that increases over time and can last for decades. The limited research on caregiving has shown that this contribution comes at an unacceptably high cost, as caregivers themselves face a significantly increased risk of reduced health and well-being. Yet most MS research focuses on the disease and the patient, with little attention paid to the specific challenges and needs of caregivers.
iConquerMS Caregivers aims to fill that research gap. Participants will have an opportunity to contribute information through surveys, share ideas for research questions, and connect with opportunities to play an active role in shaping and conducting research focused on MS caregivers. In addition, the caregiver focused initiative provides much needed information and a circle of support to help MS caregivers.
"As the first and only online community crafted by and for people who are taking care of someone living with MS, iConquerMS Caregivers offers participants the opportunity to share knowledge and learn best practices for meeting the everyday and long-term challenges of being a caregiver for someone with MS without losing themselves in the process," says Jon Strum, MS activist, care partner, and host of the weekly podcast, RealTalkMS™, who leads ACP's Care Partner Advisory Board. "Like all participants in the iConquerMS community, MS caregivers now have a place to learn about caregiver research, participate in research focused on their needs, and suggest research on topics that matter most to them."
ACP has partnered with Strum to lead a steering committee of stakeholders to guide the project and design and develop outreach and engagement activities, integration of care partner perspectives in research, and dissemination of results and materials.
"By including these important communities in the iConquerMS family, we'll be able to learn important information about the impact of caring for someone with MS on caregiver health, work, emotions, relationships, and other important aspects of their lives," says Sara Loud, Chief Executive Officer, of ACP. "These projects will round out our understanding of the needs and priorities of people affected by MS from a wider perspective to guide future support and treatment."
The iConquerMS Caregivers portal is the first of several projects, co-led by ACP and Strum, designed to support MS caregivers. Two additional programs are in development to address caregivers' needs.
- iConquerMS Care Partner Protocol will offer a carefully vetted and curated selection of information and support resources for people caring for someone living with MS, which is put together by ACP's Care Partner Advisory Board. Because people affected by MS have different needs at different times along the journey, these resources are identified so people can reach for them when they are most relevant.
- iConquerMS Caregivers in Focus, will be a workgroup composed of people affected by MS, including caregivers, to guide the iConquerMS Caregivers effort and lead additional projects.
For more information about iConquerMS Caregivers, please visit https://caregivers.iconquerms.
About Accelerated Cure Project for MS
ACP (www.acceleratedcure.org) is a patient-founded non-profit organization dedicated to accelerating research efforts to improve the health, healthcare and quality of life of people affected by MS. The organization promotes scientific collaboration and accelerates research by rapidly and cost-effectively providing researchers worldwide with people, data and biosample resources they need to explore novel research ideas that can lead to better care for people living with MS. The major programs of Accelerated Cure Project are the ACP Repository, the iConquerMS™ People-Powered Research Network, the Minority Research Engagement Partnership Network, and the RIDE (Research Inclusion Diversity and Equity) Council.
About the iConquerMS People-Powered Research Network
iConquerMS™ (www.iConquerMS.org) is a research initiative by and for individuals affected by MS who contribute their ideas and their health data. iConquerMS™ was established in 2014 by the Accelerated Cure Project for MS, in partnership with Feinstein Kean Healthcare and Arizona State University. Initial funding for iConquerMS™ and for iConquerMS Caregivers was provided by the Patient-Centered Outcomes Research Institute (PCORI) (www.PCORI.org). Over 8,000 individuals living with MS are currently registered as iConquerMS™ research participants, constituting a large and growing cohort for data-driven research into topics that matter most to people affected by MS. iConquerMS™ achieves its purpose, to improve the health, healthcare and quality of life of people affected by MS, through collaborations with U.S. and international academic, government and industry organizations.
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