What Matters Most Research Program

Alzheimer's disease (AD) is the most common cause of dementia and is a devastating, progressive, ultimately fatal disease affecting millions of people globally with these numbers anticipated to continue to grow with aging populations. AD affects not only the people living with AD (PLWAD) but also their care partners, families and society as a whole.

What is the What Matters Most Research Program?

What Matters Most, a research program sponsored by USAgainstAlzheimer’s, seeks to improve the lives of people living with Alzheimer’s disease (PLWAD) and their care partners by incorporating lived experiences into the evaluation of meaningful benefits in treatment. For more than 8 years, RTI Health Solutions has partnered with USAgainstAlzheimer’s Alzheimer’s Disease Patient and Caregiver Engagement initiative to conduct multiple qualitative and quantitative research studies on the treatment-related needs, preferences, and priorities of PLWAD and their care partners and the instruments used to measure these constructs. This effort includes a steering committee comprised of industry partners, academics, regulators, PLWAD, and/or care partners.

Key Alzheimer's research findings so far include:

• Importance of Symptoms and Impacts: PLWAD and care partners rated a wide range of Alzheimer's disease (AD) symptoms and impacts as highly important, going beyond memory and gross functional abilities to include emotional well-being, independence, health, and safety.
• Conceptual Model of Disease: What Matters Most research has led to the development of the first comprehensive PLWAD and care partner-based conceptual model of disease that contextualizes 50 WMM concepts across six domains: thought processing, communication, mood/emotions, daily activities, social life/activities, and general independence.
• Prioritizing WMM: Round 2 of the research identified priorities and impacts among these important concepts across the spectrum of disease.
• Differences in Perspectives: PLWAD and care partners differ in aspects of both importance rating and priority ranking, supporting the importance of collection of both perspectives.
• Consistency Across Groups: Individuals at risk for AD (with unimpaired cognition but evidence of AD pathology) rated the importance of symptoms and impacts similarly to those with mild cognitive impairment or mild AD, supporting early intervention.

The Impact of RTI's Alzheimer's Research

Our work is making an impact. RTI Health Solutions researchers, along with our partners, have published numerous articles and posters based on these findings, have participated in invited conference presentations, YouTube interviews and the results are attracting attention from academics and physicians involved in dementia care. 

What Matters Most represents a crucial step toward Alzheimer’s disease treatment that incorporates the lived experiences of those most affected by this devastating disease. By challenging the traditional reliance on clinical outcome assessments anchored in clinicians' impressions, What Matters Most is paving the way for a more patient-centric framework. Our research has helped uncover symptoms, functioning, and outcomes that truly matter to PLWAD and their care partners when developing and evaluating treatments for Alzheimer’s disease.