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1 ADC Ed Core Alzheimer’s Association Update Maria C. Carrillo, Ph.D. Vice President, Medical& Scientific Relations

ADC Ed Core Alzheimer’s Association Update...Alzheimer’s Association Contact Center specialists speak to every matched individual 4 5 Participant then calls trial site directly

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Page 1: ADC Ed Core Alzheimer’s Association Update...Alzheimer’s Association Contact Center specialists speak to every matched individual 4 5 Participant then calls trial site directly

1

ADC Ed Core Alzheimer’s Association Update

Maria C. Carrillo, Ph.D. Vice President, Medical& Scientific Relations

Page 2: ADC Ed Core Alzheimer’s Association Update...Alzheimer’s Association Contact Center specialists speak to every matched individual 4 5 Participant then calls trial site directly

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Global Research & Development Funding Trends

Page 3: ADC Ed Core Alzheimer’s Association Update...Alzheimer’s Association Contact Center specialists speak to every matched individual 4 5 Participant then calls trial site directly

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Adapted from appropriations progress charts by the American Association for the Advancement of Science.

Cell 2013 Jul 3 154(1): 16-19

US Research Funding Trends

Page 4: ADC Ed Core Alzheimer’s Association Update...Alzheimer’s Association Contact Center specialists speak to every matched individual 4 5 Participant then calls trial site directly

4

570

study sites are listed on

TrialMatch

165

studies are listed on

TrialMatch

As of August, 2013

Presenter
Presentation Notes
High level stats on how big TrialMatch is.
Page 5: ADC Ed Core Alzheimer’s Association Update...Alzheimer’s Association Contact Center specialists speak to every matched individual 4 5 Participant then calls trial site directly

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Person with the disease or caregiver or physician or healthy volunteer completes a disease-specific profile via phone or internet

or

1 Unique profile compared to structured match criteria 2

From unbiased match results, individual selects trial matches & cities; and with permission…

3 Alzheimer’s Association Contact Center specialists speak to every matched individual

4 5

Participant then calls trial site directly.

Profile Match Criteria

works How

Presenter
Presentation Notes
Overview of how TrialMatch works (probably too much for this talk, especially with tight time limit—feel free to cut).
Page 6: ADC Ed Core Alzheimer’s Association Update...Alzheimer’s Association Contact Center specialists speak to every matched individual 4 5 Participant then calls trial site directly

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40,000+

people have completed a

profile

13,500+

people have been referred to a study site

As of September, 2013

Presenter
Presentation Notes
More impressive high level stats on how big TrialMatch is. Can mention it launched in 2010.
Page 7: ADC Ed Core Alzheimer’s Association Update...Alzheimer’s Association Contact Center specialists speak to every matched individual 4 5 Participant then calls trial site directly

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How does compare

• to the general population (especially those 65 and older)?

• to people with Alzheimer’s and other dementias?

• to caregivers for people with Alzheimer’s and

other dementias?

Presenter
Presentation Notes
Rest of the slides will provide some answers to these questions. For TM data, I used FY13 numbers throughout.
Page 8: ADC Ed Core Alzheimer’s Association Update...Alzheimer’s Association Contact Center specialists speak to every matched individual 4 5 Participant then calls trial site directly

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? Who is

FY 2013 data

Presenter
Presentation Notes
I think this will surprise most people.
Page 9: ADC Ed Core Alzheimer’s Association Update...Alzheimer’s Association Contact Center specialists speak to every matched individual 4 5 Participant then calls trial site directly

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Race/ethnicity

FY 2013 data

Presenter
Presentation Notes
Vast majority of people with AD are >65, so this slide shows the racial/ethnic makeup of the population aged 65+.
Page 10: ADC Ed Core Alzheimer’s Association Update...Alzheimer’s Association Contact Center specialists speak to every matched individual 4 5 Participant then calls trial site directly

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Race/Ethnicity comparison Population aged 65+

U.S. Census Bureau data (2010) FY 2013 data

Presenter
Presentation Notes
How TM profiles compare to general population aged 65+, in terms of race/ethnicity. Note: Left graph is same data as from slide 11.
Page 11: ADC Ed Core Alzheimer’s Association Update...Alzheimer’s Association Contact Center specialists speak to every matched individual 4 5 Participant then calls trial site directly

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Percentage of Americans with Alzheimer’s and other dementias

Facts & Figures, 2010

2.9 9.8

26.9

12.4

32.5

54.6

9.3

23.7

44.8

65-74 75-84 85+

White (Non-Hispanic) African-American Hispanic

Presenter
Presentation Notes
Note that African-Americans and Hispanics are disproportionately affected by dementia.
Page 12: ADC Ed Core Alzheimer’s Association Update...Alzheimer’s Association Contact Center specialists speak to every matched individual 4 5 Participant then calls trial site directly

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Gender comparison Population aged 65+

with Alzheimer’s

Facts & Figures 2013 FY 2013 data

Population aged 65+ with Alzheimer’s

Presenter
Presentation Notes
How TM profiles compare to aged 65+ with Alzheimer’s, in terms of gender. Note: Left graph is same data as from slide 16.
Page 13: ADC Ed Core Alzheimer’s Association Update...Alzheimer’s Association Contact Center specialists speak to every matched individual 4 5 Participant then calls trial site directly

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Education

FY 2013 data

Presenter
Presentation Notes
(Feel free to delete this slide. I don’t have great data on education in older adults or in those with dementia, so this just includes caregivers.) How TM profiles compare to caregivers for people with dementia, in terms of education. TM profiles are far better educated: almost 75% have at least some college.
Page 14: ADC Ed Core Alzheimer’s Association Update...Alzheimer’s Association Contact Center specialists speak to every matched individual 4 5 Participant then calls trial site directly

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The next generation of TrialMatch will be:

• Smarter • Responsive & Engaging • Personalized • Diverse

Page 15: ADC Ed Core Alzheimer’s Association Update...Alzheimer’s Association Contact Center specialists speak to every matched individual 4 5 Participant then calls trial site directly

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Person with the disease or caregiver or physician or healthy volunteer completes a disease-specific profile via phone or internet

or

1 Unique profile compared to structured match criteria 2

From unbiased match results, individual selects trial matches & cities; and with permission…

3 Alzheimer’s Association Contact Center specialists speak to every matched individual

4 5

Participant then calls trial site directly.

Profile Match Criteria

works How

Presenter
Presentation Notes
Overview of how TrialMatch works (probably too much for this talk, especially with tight time limit—feel free to cut).
Page 16: ADC Ed Core Alzheimer’s Association Update...Alzheimer’s Association Contact Center specialists speak to every matched individual 4 5 Participant then calls trial site directly

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Person with the disease or caregiver or physician or healthy volunteer completes a disease-specific profile via phone or online

or

1 Unique profile compared to structured match criteria 2

From match results, selects trial matches and receives match info via TM online account

3 Every 2 weeks an automatic search for new trial matches sends an email alert if new matches found AND **New national trials will trigger automatic email alert to matched individuals

4 5

Participant then calls trial site directly.

Profile Match Criteria

WILL WORK HOW

Traditional TM Service: Individual can request to speak to an Alzheimer’s Association Contact Center Specialist

Presenter
Presentation Notes
Overview of how TrialMatch works (probably too much for this talk, especially with tight time limit—feel free to cut).
Page 17: ADC Ed Core Alzheimer’s Association Update...Alzheimer’s Association Contact Center specialists speak to every matched individual 4 5 Participant then calls trial site directly

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www.alz.org/research

Thank you for your time!

Page 18: ADC Ed Core Alzheimer’s Association Update...Alzheimer’s Association Contact Center specialists speak to every matched individual 4 5 Participant then calls trial site directly

18 alz.org