iConquerMS expands research efforts to focus on MS caregivers

iConquerMS, a research initiative where people affected by multiple sclerosis (MS) contribute their health data and ideas, is expanding its research program to include caregivers of people with MS.

Established in 2014 by the Accelerated Cure Project (ACP), iConquerMS has launched a new website and research program solely dedicated to the needs of 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,” Jon Strum, who leads ACP’s Care Partner Advisory Board, said in a press release.

“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,” added the MS activist, care partner, and host of the weekly podcast RealTalkMS.

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Progressive, long-term nature of MS means patients will require caregiving

In people with MS, the immune system wrongly attacks healthy parts of the brain and spinal cord. Such attacks lead to inflammation and nerve cell damage, resulting in common MS symptoms such as difficulties with mobility, fatigue, chronic pain, and visual disturbances.

Because of the progressive and long-term nature of MS, at some point, many patients will require help from partners, family, and friends to manage medications and daily life tasks. Often, caregiving duties increase over time and can last for years, which, according to research, can negatively affect the health and well-being of caregivers.

Participants in iConquerMS Caregivers will have the opportunity to complete surveys about their caregiving and help shape related research. At the same time, the initiative will provide caregivers with helpful information and support.

“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,” said Sara Loud, CEO of ACP, a patient-founded nonprofit that supports research efforts to improve the health and quality of life of MS patients.

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.

2 additional programs being developed for caregivers

Co-led by ACP and Strum, iConquerMS Caregivers is the first of several projects designed to support MS caregivers, with two additional programs in development.

The iConquerMS Care Partner Protocol, organized by ACP’s Care Partner Advisory Board, will offer curated information and resources for MS caregivers, which will help with the changing needs of the patient.

iConquerMS Caregivers in Focus will be a working group of patients and caregivers to help guide the caregivers program and lead additional projects.

“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,” Loud said.