About Us

AD PACE is a ground-breaking patient and caregiver-led collaboration of industry, academics, government agencies and advocates building a persistent platform to deliver new insights to research, regulatory and payer authorities on preferred treatment and health outcomes sought by those living with Alzheimer's and their caregivers.

AD PACE has

• delivered new knowledge to the field on what matters most to people living with Alzheimer’s disease their care partners across the disease trajectory through the What Matters Most™ (WMM) Research Program; 
• developed a conceptual model of AD that captures meaningful outcomes within and across various functional domains; and 
• mapped outcomes of meaning to the clinical outcomes assessment measures most widely used in AD clinical trials today

As used in AD PACE, “patients” is intended to refer broadly to all persons living with or at risk for Alzheimer’s.

Strategy

• Patient-focused drug development (PFDD) is based on the premise that treatments should be designed to meet the needs of patients. By implication, PFDD requires that clinical trials demonstrate not only the effect of a drug on clinical outcomes, but also that those outcomes are meaningful to patients.
• It is essential that the Alzheimer’s treatments and care and services are designed to meet the needs patients and caregivers. Today, there is little scientific research on what matters most to those with and at risk for Alzheimer’s and their caregivers. Given this, drug developers cannot be assured that new therapies in the pipeline for Alzheimer’s will deliver the meaningful outcomes that those affected by Alzheimer’s seek and hope for.  AD PACE is aimed at meeting this need.
• Identifying and quantifying treatment-related needs, preferences, and priorities will also provide value beyond therapy development. This knowledge will be developed in a manner so that it will also inform payment and coverage decisions as well as the design of care and services. AD PACE, through rigorous research, will define what is important to patients and caregivers and will share these results with researchers, policymakers, regulators, such as the Food and Drug Administration, and payers. We will advocate for the use of this information to assure that therapies deliver clinically meaningful outcomes and that payers take this knowledge into consideration when considering what is valuable to beneficiaries.  AD PACE will also develop an enduring survey instrument that can be easily accessible to stakeholders, used to replicate results by researchers outside of this initiative, and expanded to understand differences among various sub-populations and for cross-sectional and longitudinal studies.
• UsAgainst Alzheimer’s sought input to inform the next phase of work for the AD PACE initiative in Spring 2026. Read the Request for Information that was released here. 

Leaders

In November 2017, AD PACE officially launched with the help of its Founding Sponsors: UsAgainstAlzheimer’s, Leaders Engaged on Alzheimer’s Disease (LEAD), Biogen, Lundbeck, Otsuka America Pharmaceutical, and HomeInstead Senior Care; with Supporting Sponsorship from Eli Lilly and Company; and Partnership Support from patients and caregivers.

As a patient and caregiver-led initiative, AD PACE relies on leading voices across the Alzheimer’s community: those living with and at risk for Alzheimer’s, Alzheimer’s caregivers, patient representatives, and Alzheimer’s advocacy organizations.

AD PACE expresses its appreciation for the key roles that representatives from Food and Drug Administration (FDA), National Institutes of Health (NIH), Centers for Medicare/Medicaid (CMS) continue to play in providing advice and expertise to this initiative.

In addition, AD PACE wishes to recognize those who contributed resources, both financial and through in-kind leadership, to the early AD PACE Design Phase. Without the efforts of these groups, AD PACE would not have become a reality: Axovant Sciences, Biogen, Eli Lilly and Company, Janssen Pharmaceuticals, Lundbeck, Otsuka America Pharmaceutical, Roche, LEAD and UsAgainstAlzheimer’s, together with leadership from these federal agencies: FDA, NIH, CMS and HHS.