New MS initiative gives patients a stronger voice in research priorities
PRADA puts focus on people from underrepresented disease communities
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A group of adults sit in a circle during a therapy session.
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The PRADA initiative empowers underrepresented MS patients to set research priorities.
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Patients identified top research areas, including fatigue and mental health.
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The initiative aims to make MS research more inclusive and better aligned with patient needs.
The Accelerated Cure Project for Multiple Sclerosis (ACP) has launched a new community-led initiative designed to ensure that people from underrepresented multiple sclerosis (MS) communities help set priorities for future MS research.
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The initiative, called Prioritized Research Agenda Development and Advancement (PRADA), creates a structured, collaborative process through which people living with MS can identify unmet needs and rank research questions they believe should be addressed first.
Unlike traditional research planning, which scientists and funders often lead, PRADA is intentionally designed to prioritize the perspectives of people with MS from communities that have frequently been excluded from clinical research. The goal is to make MS research more inclusive and better aligned with patients’ real-world needs.
“Too often, people affected by MS — especially those from communities historically excluded from research — are asked to weigh in only after key decisions have already been made,” Hollie Schmidt, vice president of scientific operations at ACP, said in a press release emailed to Multiple Sclerosis News Today.
Research questions cover topics from fatigue to mental health needs
MS is a neurodegenerative disease that can cause a wide range of symptoms. Because symptoms vary from patient to patient, depending on which parts of the brain and spinal cord are most affected, treatment plans should be tailored to each patient’s symptoms and preferences. However, significant gaps remain in understanding how to address many of these challenges.
To help close those gaps, ACP launched iConquerMS, a network of more than 8,500 people affected by MS who contribute data, biological samples, and lived experiences to drive research on topics they consider most important.
PRADA was developed through iConquerMS. Powered by more than 600 iConquerMS participants, the initiative used multiple rounds of surveys, discussions, and rankings to create a list of the top 10 research priorities related to symptoms and treatment.
The resulting research questions focus on how specific brain lesion locations, aging, diet, and vitamin D levels influence MS symptoms and long-term disease progression. Participants also prioritized research into fatigue, temperature sensitivity, and mental health needs, as well as how cognitive burden and fatigue may affect walking ability.
The PRADA process is focused throughout on the interests of people with MS, and the resulting research agenda highlights the questions that are most meaningful both to specific groups and the community as a whole.
Additionally, the list highlights the need to better understand how symptoms and treatment responses vary across different racial and ethnic groups.
“The PRADA process is focused throughout on the interests of people with MS, and the resulting research agenda highlights the questions that are most meaningful both to specific groups and the community as a whole,” Schmidt said.
Members of the iConquerMS Research Inclusion, Diversity, and Equity (RIDE) council were involved throughout the process. This council works to expand participation in research and advises investigators on how to design more inclusive studies. According to ACP, early input from RIDE members helped determine which research questions moved forward and shape the final priority list.
The priorities are now being shared with researchers, funders, and partners to guide future studies. ACP also plans to share lessons from the initiative with the broader research community to support more patient-centered and inclusive research practices.
The initiative received funding from Bristol Myers Squibb and EMD Serono (known as Merck outside North America).
