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S<\/span>argent College\u2019s <\/span>Speech, Language & Hearing Sciences<\/a> department<\/span> is currently at the forefront of aphasia research, working with <\/span>the <\/span>National Aphasia Association<\/a> (NAA) to identify what matters most to people living with aphasia and to the people who support them.\u00a0<\/span><\/p>\n The project<\/a>, titled \u201cBuilding Capacity for <\/span>Patient-Centered Clinical Effectiveness Research in Stroke-Related Aphasia<\/span>,\u201d looks to formalize the first ever Patient Centered Core Impact Set (PC-CIS) <\/span>for aphasia in the United States<\/span>, which would establish a clear set of research priorities for further aphasia research. <\/span>Following the National Health Council’s PC-CIS framework, <\/span>the <\/span>core <\/span>impact set will identify and prioritize the impacts of aphasia that patients, families, healthcare providers, and other members of the care network believe should be considered <\/span>in research, clinical practice, and more<\/span>. The impacts can range from cognitive changes to daily struggles, taking a broader view of how the condition affects people\u2019s everyday lives.\u00a0<\/span><\/p>\n Sargent College\u2019s <\/span>Speech, Language & Hearing Sciences department<\/span> has a deep rooted history in aphasia research. It is home to the longest-running aphasia support group<\/a> in the country, t<\/span>he Aphasia Resource Center<\/a><\/span>, with an established network of aphasia research centers. Headed by Dr. Swathi Kiran<\/a> and organized by PhD student Madeline Dunne, the project connects over 150 diverse participants to a mission to continue meaningful aphasia research. <\/span>Using purposive participant sampling, the project aims to reflect the demographics of stroke and aphasia in the US, with an emphasis on sociodemographics, geographic location, and other factors.<\/span><\/p>\n \u201cHow can we <\/span>engage and<\/span> talk to patients, family members, healthcare providers, to define what matters most?\u201d asks graduate student Madeline Dunne. \u201cIt really spans beyond \u2018just\u2019 communication. We\u2019re taking into account treatment experiences and quality of life, things that aren\u2019t typically examined.\u201d<\/span><\/p><\/blockquote>\n While aphasia is a language disorder, Madeline describes how participants have stated everything from interpersonal relationship changes, loss of income, and difficulty navigating healthcare, as some of the concerns of patients and care networks.<\/span><\/p>\n The project began by gathering a broad range of potential impacts through <\/span>an environmental scan<\/span>. Participants took part in focus groups and open discussions where they could describe their experiences and identify the aspects of aphasia that mattered most to them. Then, surveys where participants were asked to quantify the importance of an impact helped researchers determine which impacts are more consistently prioritized <\/span>and relevant to day-to-day life.<\/span>\u00a0<\/span><\/p>\n![\"\"](\"\/sargent\/files\/2026\/09\/unnamed-636x339.png\")