March is Multiple Sclerosis Awareness month, a time to raise awareness, share information and support the scientists that are working to advance our understanding of the disease. Pediatric MS is relatively rare. According to the National MS Society, approximately 3 to 5 percent of individuals with MS are diagnosed before the age of 16. Because of the comparatively smaller pool of pediatric study participants, and because research with children requires additional steps to ensure their care and protection, the vast majority of MS research focuses solely on adult populations. As a result, not much information is available on the long-term impact of pediatric MS, and the safety and effectiveness of its treatments in a younger population. At ACP, we’re committed to changing that!
iConquerMS is a community of people with MS, their care partners, researchers, doctors, and others who have come together to understand MS and search for solutions. Members can confidentially share their health information, questions, and ideas to inform and inspire patient-centered outcomes research (PCOR) and clinical effectiveness research (CER).
iConquerMS recently expanded its community to include children, adolescents and their family members through the iConquerMS Kids & Teens program.
The insights and expertise of pediatric MS stakeholders were instrumental in the design and implementation of iConquerMS Kids & Teens. Three surveys were launched last year to obtain feedback about participating in research – one to individuals diagnosed with MS as a child or teen, one to their parents and guardians, and one to healthcare providers and researchers. Responses from youth with MS are summarized below:
To help keep iConquerMS Kids & Teens in sync with the pediatric MS community, these surveys will remain open indefinitely.
Pediatric MS stakeholders also play a key role in running the initiative. A Steering Committee, consisting of teens with MS, a parent, and researchers, healthcare providers, and funders with interests in pediatric MS, oversees all aspects of the project. This group is co-chaired by ACP’s CEO, Sara Loud, and Emily Blosberg, a young adult diagnosed with MS at 15 years old. Emily is founder and executive director of Mr. Oscar Monkey, an organization that helps kids with MS by providing age-appropriate resources, advocacy, and community.
iConquerMS Kids & Teens is open to any child or teenager with MS, their families and other relatives. Youth members are asked to complete an initial survey upon enrollment, to share a bit about themselves and their MS history. In the future, there will be additional opportunities for them to contribute information about their general health, family health history, nutrition, lifestyle and exposure to environmental factors. These data will be confidentially shared to enable research to better understand how MS affects children and adolescents. Children and teens with MS are often not included in conversations about research so it may not reflect their priorities and preferences, nor address the outcomes of greatest importance to them. iConquerMS Kids & Teens empowers youth with MS to propose research questions and priorities to the research community, paving the way for relevant and impactful pediatric MS research.
Youth diagnosed with MS and their loved ones face a great deal of uncertainty living with a chronic and unpredictable disease. iConquerMS Kids & Teens offers resources to learn more about the disease, including answers to common questions about MS. MS 101 is an educational series that provides information about navigating life with MS as a young person. The topics covered are developed in collaboration with a diverse community of kids, teens, and young adults who are living with MS and who provide their insights as to how to develop and implement meaningful and useful content for all. We’ll continue to add new content and resources based on the needs of the Kids & Teens community.
iConquerMS is the only MS people-powered research network that is driving, shaping, and accelerating research into topics that matter most to the people affected by the disease. Increasing pediatric participation in iConquerMS will allow investigators to conduct studies to address the unique needs, interests, and priorities of children and teens living with MS. This previously overlooked age group knows their disease better than anyone. Data about their daily experiences, symptoms and clinical treatment will help to create a key resource for research. Insight from youth with MS and their families regarding research topics they deem important will help to bridge the gap between the MS and research communities. Every piece of data expands the pool of information that researchers can draw from and every voice matters. We are stronger when we all work together. Are you a child or teenager with MS, or one of their loved ones? Please consider joining iConquerMS today! Do you still have questions, or are you a researcher interested in pediatric MS research? Please contact us to learn more.
