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Advisory Council February 2017 Meeting Presentation: Strategies to Facilitate Recruitment and Screening

Friday, February 3, 2017

Printer Friendly Version in PDF Format (14 PDF pages)


Strategies to facilitate recruitment and screening for Alzheimer's clinical trials

Rachel L. Nosheny, Ph.D.
UCSF Department of Radiology and Biomedical Imaging

Alzheimer's Patient & Caregiver-Powered Research Network

  • Funded by:
    • The National Patient-Centered Clinical Research Network
  • A collaboration between:
    • Mayo Clinic
    • Univesity of Florida
    • USAgainst Alzheimer's
    • BrainHealth Registry
  • Leadership:
  • Principal Investigator
    • Ron Petersen, Mayo Clinic
  • Co-Investigators
    • Meryl Comer, Geoffrey Beene Foundation
    • Michael Weiner, UCSF, Brain health Registry
    • Glenn Smith, University of Florida
    • Alex Alexander, Mayo Clinic

AD-PCPRN Goal and Specific Aims

  • Overall goal: To accelerate development of effective treatments for Alzheimer's disease and related dementias
  • Specific Aims
    • Connect patients, caregivers, and researchers focused on developing, conducting, and disseminating patient-centered dementia research
    • Recruit, engage, and educate individuals at risk for or with Alzheimer's Disease and related dementias and caregivers in a patient-centered network
    • Screen, refer, and enroll individuals in Alzheimer's trials and observational studies
    • Increase diversity in Alzheimer's trials through outreach to minority populations, especially African Americans and Latinos

AD-PCPRN Structure

AD-PCPRN Structure. portal for recruitment, engagement & longitudinal monitoring Home Page screen shot.

Brain Health Registry: How It Works

  1. Sign up
    • Register, consent online
  2. Tell us about yourself
    • 13 questionnaires (health history, family history, medications, memory problems, mood, lifestyle)
  3. Take some tests
    • 3 Online cognitive tests
  4. Invite a study partner
    • Study Partner can separately register and answer questions about participant and self
  5. Come back...and come back again
    • Participants and study partners return every 6 months to complete follow-up tasks

AD-PCPRN participants in the Brain Health Registry

  • Total of 30,944 participants enrolled
    • Age 55+
    • Interested in learning about future research opportunities
  • Longitudinal data collected from 12,975
    • Retention rate of ~40% over 2 years of follow up
    • 31% complete all tasks
    • 64% provide enough information to assess whether they are likely to be eligible for AD trials

Geographic distribution of participants

United States map.


Age Distribution
Bar chart.


Donut chart: Female (73%), Male (26%).

Race & Ethnicity

  • 4% African American
  • 2.1% Asian
  • 86.7% Caucasian
  • 1.2% Declined To state
  • 2.8% Mixed
  • 0.3 Native American
  • 2.3% Other
  • 0.1% Pacific Islander
Donut chart: Not Latino (96%), Latino (3%).

Educational Attainment

  • 2.2% Grammar School
  • 5.8% High School
  • 18.3% Some College
  • 8.5% 2 Year Degree
  • 28.8% 4 Year Degree
  • 25.1% Masters Degree
  • 5.1% Doctoral Degree
  • 5.8% Professional Degree

Alzheimer's risk factors

Family History of Alzheimer's
Donut chart: No (64%), Yes (33%), Unknown (2%).


Memory Concern
Donut chart: No (45%), Yes (52%), Unknown (2%).

How does the AD-PCPRN facilitate AD clinical study recruitment?

AS-PCPRN Clinical Study Recruitment Structure.

Prescreening participants for AD clinical trials

Screening Funnel: Enter AD-PCPRN; Cognitive test scores; Self-report memory problems or concerns; Common exclusion criteria; Risk Factors; Eligible Participants.

ADPCPRN participants likely to be eligible for Alzheimer's trials

Donut Chart: Prescreened Ineligible (69%); Cognitively-normal (22.9%); Possible cognitive impairment (6.7%); Self-reported dementia (1.4%).

Referral of AD-PCPRN participants to clinical studies

  • 10,001 participants have been referred to 10 Alzheimer's and aging clinical studies
    • Large, observational studies (late life depression, healthy aging, olfaction)
    • Randomized treatment trials
    • Validation study of online tests
  • 757 participants have been enrolled in studies
    • Vast majority are enrolled in observational or validation studies
    • A major challenge has been to successfully enroll in treatment trials

New strategies to maximize enrollment in trials

Enrollment structure.


Enrollment structure.


Enrollment structure.


Enrollment structure.


Enrollment structure.

Facilitating recruitment through study partner engagement: The Brain Health Registry Caregiver & Study Partner Portal Study Partner Portal screen shot.

Brain Health Registry Caregiver and Study Partner Portal (CASPP)

  • Infrastructure & database within BHR for a study partner to separately register and consent online
  • Study partners answer questions about the participant's cognitive and daily functioning
  • Unique advantages of study-partner reported information
    • Associated with many disease-related outcomes
    • May sometimes be more accurate than self-report
    • Can identify change in function using a single data point
    • Focuses on outcomes that matter to patients & families
    • Can help overcome patient barriers to participation
    • May help recruit participants who are too impaired to join themselves
  • Study partners also report on their own health and caregiver experience
    • Improve caregiver health

Demographics of AD-PCPRN Study Partners

Total: 1895 Study Partners

Age Distribution
Bar Chart.


Pie Chart: Female (44.6%), Male (55.4%).


Relationship to Participate
Bar Chart.


Caregiver Status
Bar Chart: Frequent caregiver for someone with disease/illness/disability (557); Infrequent caregiver for an older person (427).

Characteristics of BHR Study Partners: Report of health/cognitive status

About the participant
Report of participant status
Concern about participant memory 9.5%
Participant cognitive change 15.6%
Participant IADL change 10.5%
Participant MCI 2.0%
Participant AD 0.9%
About the study partner him/herself
Self-report health
Memory concern 34.7%
Positive stress screening question 6.3%
Positive mood screening question 15.4%

Online study partner-reported data provides valid information about participant function

  • Study partner-reported variables are significantly associated with:
    • self-reported subjective memory complaints
    • Self-reported recent changes in memory and daily functioning
    • Online memory test scores of the participant
Scatter chart.

Summary & Future Directions

  • Overall Goal of the AD-PCPRN is to facilitate Alzheimer's clinical research
  • To date
    • Over 30,000 participants, 1800 study partners, and 800 caregivers are enrolled in AD-PCPRN through the Brain Health Registry
    • Over 700 participants have been enrolled in clinical research studies
    • Engagement efforts are reaching many more, with a focus on increasing diversity
    • Major challenges are successful enrollment in to treatment trials and recruitment of minorities
  • In the future, the AD-PCPRN will aim to
    • Increase enrollment and engagement of participants
    • Optimize referral to studies by analysis of success rates
    • Conduct research to advance recruitment science

Alzheimer's Patient & Caregiver-Powered Research Network

  • Partners:
    • Mayo Clinic
    • Univesity of Florida
    • USAgainst Alzheimer's
    • BrainHealth Registry
  • Leadership:
    • Ronald C. Petersen, MD, PhD, Mayo Clinic
    • Alex Alexander, MBA, MPA, Mayo Clinic
    • Meryl Comer, Geoffrey Beene Foundation
    • Glenn Smith, PhD, University of Florida
    • Michael W. Weiner, MD, UCSF
  • Governance Board:
    • all investigators +
    • Debra Lappin, FaegreBD Consulting
    • Rachel Nosheny, UCSF, Brain Health Registry
    • Sally Sacher, Us Against Alzheimer's
    • George Vradenburg, Global Alzheimer's Platform Foundation

February 3, 2017 -- Advisory Council Meeting #23

The meeting was held on Friday, February 3, 2017, in Washington, DC. The theme of this Advisory Council meeting was clinical trials for Alzheimer's disease and related dementias and recruitment challenges. Additional afternoon presentations included updates on progress towards a Care and Services Summit, federal workgroup updates, and preparation for the Advisory Council's 2017 Recommendations, due in April 2017. Material available from this meeting is listed below and is also available at

Comments and questions, or alerts to broken links, should be sent to


General Information




Presentation Slides



  • Welcome thru Perspectives -- [Video]

  • Rachel, Jessica, George Presentations -- [Video]

  • Keith Presentation and Panel Discussion -- [Video]

  • Public Comments -- [Video]

  • Care Summit and Milestones -- [Video]

  • Federal Workgroups and Adjourn -- [Video]