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MAIN NAVIGATION

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    * Alzheimer's is the 6th leading cause of death in the United States, and
      the only top-10 deadly disease not to have a treatment or cure.
   
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   IN EARLY-STAGE ALZHEIMER’S PATIENTS
   
   New study demonstrates how diet, exercise, and other interventions improved
   brain cognition...
   
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ALZHEIMER'S DISEASE PATIENT AND CAREGIVER ENGAGEMENT 


WHAT MATTERS MOST RESEARCH RESOURCES

 * Press Release
   
   July 29, 2020
   
   
   NEW USAGAINSTALZHEIMER’S RESEARCH SHOWS WHAT MATTERS MOST TO PATIENTS AND
   CAREGIVERS IN DRUG TREATMENTS
   
   UsAgainstAlzheimer’s (UsA2) today released five publications delivering
   first-of-their kind findings on outcomes from dementia treatments and
   therapies that matter most to individuals with Alzheimer’s and those who care
   for them.
   
   Read more
 * Resources
   
   July 29, 2020
   
   
   AAIC 2020: THE IMPORTANCE OF CARE PARTNER INPUT IN ALZHEIMER’S DISEASE (AD)
   DRUG DEVELOPMENT
   
   Read More (508.47 KB)
 * Resources
   
   July 29, 2020
   
   
   QUANTIFYING WHAT MATTERS MOST TO PATIENTS AND CARE PARTNERS IN ALZHEIMER'S
   DISEASE
   
   Read More (1.58 MB)
 * Resources
   
   July 29, 2020
   
   
   EVALUATION OF WHAT MATTERS MOST IN EXISTING CLINICAL OUTCOMES ASSESSMENTS IN
   ALZHEIMER'S DISEASE
   
   Read More (351.65 KB)

 * About Us
 * Strategy
 * Leaders


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 will

 * deliver a wide-ranging, scientifically rigorous understanding of what matters
   most to individuals across the breadth of the Alzheimer’s lived-experience;
 * match the scope and pace of the development of FDA patient engagement
   guidance and policies; 
 * become an authoritative 'patient voice' to inform product and clinical trial
   design, regulatory submissions, payer value models, coverage and payment
   determinations, and research on care and services; 
 * initially be focused in the U.S. but collaborate with global partners.

 

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.


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, the Dementia Action Alliance, Balm in Gilead,
Alzheimer’s Research United Kingdom, and researchers from leading academic
centers, including Columbia University, Cleveland Clinic, UC Irvine, and the
University of North Carolina.

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.

 


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UsAgainstAlzheimer's


LISTEN TO THE AD PACE ANNOUNCEMENT - MAY 21, 2018

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May 22, 2018

UsAgainstAlzheimer's


USA2 VOICES OF ALZHEIMER’S PROGRAM

Our vision is that rigorous data on what matters most to people living with
dementia and care partners – the science of us – drives policy, research, drug
development and access decisions affecting their lives. This program, which
includes AD PACE and the A-LIST, develops patient and caregiver insights and
experience data to inform advocacy, research, regulatory approvals, access
determinations, care and services. This work will offer new knowledge to the
field generally and advance drug development.


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