www.usagainstalzheimers.org Open in urlscan Pro
2606:4700:3032::ac43:d44d  Public Scan

Form analysis
3 forms found in the DOM

GET /search/node

<form action="/search/node" method="get" id="search-block-form" accept-charset="UTF-8">
  <div class="js-form-item form-item js-form-type-search form-type-search js-form-item-keys form-item-keys form-no-label">
    <label for="edit-keys" class="visually-hidden">Search</label>
    <input title="Enter the terms you wish to search for." data-drupal-selector="edit-keys" type="search" id="edit-keys" name="keys" value="" size="15" maxlength="128" class="form-search">
  </div>
  <div data-drupal-selector="edit-actions" class="form-actions js-form-wrapper form-wrapper" id="edit-actions">
    <input data-drupal-selector="edit-submit" type="submit" id="edit-submit--2" value="Search" class="button js-form-submit form-submit c-btn c-btn--primary">
  </div>
</form>

POST /networks/ad-pace?utm_source=ad-pace.com&utm_medium=forwarded_domain

<form id="us-pop-signup" data-drupal-selector="signup-popup-form" action="/networks/ad-pace?utm_source=ad-pace.com&amp;utm_medium=forwarded_domain" method="post" accept-charset="UTF-8">
  <fieldset class="community-signup-fieldset js-form-item form-item js-form-wrapper form-wrapper" data-drupal-selector="step-1-fieldset" id="step-1-fieldset">
    <legend>
      <span class="fieldset-legend">
        <h1>Join Us</h1>
        <p>Join Us today in the fight for a cure! Sign up to join the UsAgainstAlzheimer’s mailing list and receive information with the latest news and updates.</p>
      </span>
    </legend>
    <div class="fieldset-wrapper">
      <div class="js-form-item form-item js-form-type-textfield form-type-textfield js-form-item-name form-item-name">
        <label for="edit-name" class="js-form-required form-required">Name</label>
        <input placeholder="Full Name" class="popup-name-us-field form-text required" id="step1-name" data-drupal-selector="edit-name" type="text" name="name" value="" size="60" maxlength="128" required="required" aria-required="true">
      </div>
      <div class="js-form-item form-item js-form-type-email form-type-email js-form-item-email form-item-email">
        <label for="edit-email" class="js-form-required form-required">Email Address</label>
        <input placeholder="join@usagainstalzheimers.org" class="popup-email-us-field form-email required" id="step1-email" data-drupal-selector="edit-email" type="email" name="email" value="" size="60" maxlength="254" required="required"
          aria-required="true">
      </div>
      <div class="js-form-item form-item js-form-type-textfield form-type-textfield js-form-item-zipcode form-item-zipcode">
        <label for="edit-zipcode">Zip Code</label>
        <input placeholder="20005" class="popup-name-us-field form-text" id="step1-zipcode" data-drupal-selector="edit-zipcode" type="text" name="zipcode" value="" size="60" maxlength="128">
      </div>
      <div class="js-form-item form-item js-form-type-tel form-type-tel js-form-item-phone form-item-phone">
        <label for="edit-phone">Mobile Phone</label>
        <input placeholder="000 000 0000" class="popup-name-us-field form-tel" id="step1-phone" pattern="(\+?\(?[0-9]{2,3}\)?)([ -]?[0-9]{2,4}){3}" data-drupal-selector="edit-phone" type="tel" name="phone" value="" size="30" maxlength="128">
      </div>
      <input class="step1-data-index" id="data-index" data-drupal-selector="edit-data-index" type="hidden" name="data-index" value="">
      <input class="popup-submit-us-field button js-form-submit form-submit c-btn c-btn--primary" id="us-submit-form" data-drupal-selector="edit-submit" type="submit" name="op" value="Submit">
    </div>
  </fieldset>
  <fieldset class="community-signup-fieldset js-form-item form-item js-form-wrapper form-wrapper" data-drupal-selector="step-2-fieldset" id="step-2-fieldset">
    <legend>
      <span class="fieldset-legend">
        <h1>Thank You</h1>
        <p>For signing up with UsAgainstAlzheimer’s and joining our fight for a cure! You will begin to receive updates in your inbox.</p>
        <div class="step2-video">
          <!--<iframe width="560" height="315" src="https://www.youtube.com/embed/tMpsn6wDS5E" frameborder="0" gesture="media" allow="encrypted-media" allowfullscreen></iframe>-->
        </div>
      </span>
    </legend>
    <div class="fieldset-wrapper">
      <input class="step2-more-ways-btn button js-form-submit form-submit c-btn c-btn--primary" id="step2-more-ways" data-drupal-selector="edit-step-2-more-ways" type="submit" name="op" value="More Ways to Take Action">
      <input class="step2-close-btn button js-form-submit form-submit c-btn c-btn--primary" id="step2-close" data-drupal-selector="edit-step-2-close" type="submit" name="op" value="Close">
    </div>
  </fieldset>
  <input autocomplete="off" data-drupal-selector="form-fbqs7-mjrg6bopcvhzmis3lksprzmrqtvwsvs1cdjo0" type="hidden" name="form_build_id" value="form-FBqS7-MjrG6bOpcvhzMIS3lKspRZmRqTvWsvs1CDJO0">
  <input data-drupal-selector="edit-signup-popup-form" type="hidden" name="form_id" value="signup_popup_form">
</form>

<form class="c-form__join--footer">
  <label>Join Us</label>
  <label class="c-icon__font c-icon__font--envelope-o"></label>
  <input type="text" name="c-form__join--field--email" id="c-form__join--field--email" placeholder="Email Address">
  <button id="c-form__join--submit-btn"></button>
  <img src="/themes/bricklett/img/loading-tiny.gif" class="c-form__join--loading" style="display: none;">
  <p class="c-form__join--message" style="display: none;"></p>
</form>

Text Content

Skip to main content
Search


Sign Up Donate


MAIN NAVIGATION

 * About Us
    * Our Impact
    * Our Team
    * Our Board
    * Careers
    * Contact
   
    * 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.
   
   ABOUT USA2
   
   Watch the Video
   
   CONNECT WITH US
   
    * Like Us on Facebook
    * Follow Us on Twitter
    * Follow us in YouTube
    * Get Email Updates

 * Our Work
   
   PROGRAMS
   
   Finding effective treatments and the prevention steps to stop Alzheimer’s
   
   Read More
   
   CONVENED CONSORTIUMS
   
   Convening a range of key stakeholders to take action on big issues.
   
   Read More
   
   INCUBATED INITIATIVES
   
   Spurring social innovation through transformative initiatives.
   
   Read More
   
   NETWORKS & COALITIONS
   
   Engaging and activating diverse communities most deeply affected by
   Alzheimer’s
   
   Read More
 * News & Media
    * Press Releases
    * Blog
    * Videos
    * Press Kit
    * Podcasts
   
   November 8, 2024
   
   
   CENTERS FOR MEDICARE AND MEDICAID SERVICES: APPROPRIATELY COVER THE COSTS OF
   BLOOD TESTS HELPING TO DETECT ALZHEIMER’S
   
   UsAgainstAlzheimer’s, along with a coalition of leading advocacy groups, is
   calling for...
   
   Read more
   
   --------------------------------------------------------------------------------
   
   JOIN US
   
   Join UsAgainstAlzheimer's right now to make a difference in the fight to stop
   Alzheimer's.
   
   Join
   
   CONNECT WITH US
   
    * Like Us on Facebook
    * Follow Us on Twitter
    * Follow us in YouTube
    * Get Email Updates

 * Research & Insights
    * The Crisis: Key Facts
    * Brain Health
    * Early Detection
    * Disparities
    * Clinical Trials
    * Reports & Research
   
   2022 ANNUAL REPORT
   
   Download Report
 * Get Involved
    * Advocate
    * Ways to Give
    * Our Partners
    * UsA2 Events
    * Women’s Leadership Council
    * Activist Toolkit
    * National Summit
    * CHANGE Act
   
   
   
   WAYS TO GIVE
   
   MEMBERSHIP PROGRAM
   
   Become a Member of UsAgainstAlzheimer's today and join a movement of people
   who don’t just talk about the Alzheimer’s crisis, but become part of the
   solution.
   
   Read More
   
    
   
   EVENT
   
   NATIONAL ALZHEIMER’S SUMMIT
   
   2024 National Summit 
   
   
   Event Page
   
   POLICY RESOURCES
   
   RESOURCES
   
   Stay updated on UsA2 legislative requests and policy.
   
   Read More
   
    

Menu

ALZHEIMER'S DISEASE PATIENT AND CAREGIVER ENGAGEMENT 


WHAT MATTERS MOST RESEARCH RESOURCES

Assessing What Matters to People Affected by Alzheimer’s Disease: A Quantitative
Analysis | Neurology and Therapy (springer.com)

 * July 17, 2024
   
   
   MEASURING WHAT MATTERS MOST TO PEOPLE LIVING WITH ALZHEIMER’S DISEASE AND
   CARE PARTNERS: WHAT MATTERS MOST QUANTITATIVE RESEARCH DEVELOPMENT
   
   Read More (183.54 KB)
 * October 9, 2023
   
   
   MEASURING WHAT MATTERS MOST TO PEOPLE LIVING WITH ALZHEIMER’S DISEASE AND
   CARE PARTNERS: WHAT MATTERS MOST QUALITATIVE RESEARCH
   
   Read More (297.96 KB)
 * July 13, 2023
   
   
   MEASURING “WHAT MATTERS MOST” TO PEOPLE LIVING WITH ALZHEIMER’S DISEASE AND
   CARE PARTNERS: A NEXT GENERATION CONCEPTUAL MODEL OF ALZHEIMER’S DISEASE
   
   Read More (119.48 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.

 


IDEATION WORKSHOP PLENARY SESSIONS

Watch Here


FOUNDING SPONSORS

Previous

Next


PARTICIPATING SPONSORS




PARTNERS AND ACADEMIC ADVISORS

Previous

Next


FEDERAL ADVISORS


UsAgainstAlzheimer's


LISTEN TO THE AD PACE ANNOUNCEMENT - MAY 21, 2018

Share on Facebook
Share on Twitter
Share on LinkedIn
Subscribe with RSS
Download this episode

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.


JOIN US

Join Us today in the fight for a cure! Sign up to join the UsAgainstAlzheimer’s
mailing list and receive information with the latest news and updates.

Name
Email Address
Zip Code
Mobile Phone


THANK YOU

For signing up with UsAgainstAlzheimer’s and joining our fight for a cure! You
will begin to receive updates in your inbox.



×
Join Us



 * 
 * 
 * 


FOOTER MENU

 * Annual Report
 * Financials
 * Privacy Policy
 * Terms & Conditions

© UsAgainstAlzheimer's 2024




SHOP FOR GOOD THIS HOLIDAY SEASON AT KENDRA SCOTT!

20% of your purchase will benefit UsAgainstAlzheimer's

Online December 6th-7th (CODE: GIVEBACK-CZFQE)

In-Store December 6th 5-7pm at
the Bethesda, MD location

Shop Now