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Connecting the Aging Network, Individuals with Dementia, and Caregivers with Research Opportunities

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Title: Connecting the Aging Network, Individuals with Dementia, and Caregivers with Research Opportunities


1
Connecting the Aging Network, Individuals with
Dementia, and Caregivers with Research
Opportunities
  • July 12, 2012

2
welcome
  • Michelle Washko, PhD
  • Center for Disability and Aging Policy
    Administration for Community Living
  • U.S. Department of Health Human Services
  • 202-357-3447
  • Michelle.Washko_at_aoa.hhs.gov 

3
http//www.aoa.gov/AoARoot/AoA_Programs/HPW/Alz_Gr
ants/index.aspxcurrent
  • Alzheimers Disease
  • Supportive Services
  • Program
  • Delivers supportive services
  • Translates evidence-based models
  • Advances state initiatives toward coordinated
    systems of home and community-based care

4
Total Active ADSSP Grants
States with DS grants are marked with


5
http//www.aoa.gov/AoARoot/AoA_Programs/HPW/Alz_Gr
ants/index.aspxcurrent scroll down to see
Current Projects
  • Evidence-Based
  • Cooperative
  • Agreements
  • demonstrate how existing evidence-based
    interventions that help people with ADRD and
    their family caregivers can be translated into
    effective supportive service programs at the
    community level.

6
ADSSP Grantee Profiles
  • http//www.adrc-tae.org/tiki-index.php?pageadsspm
    ap

7
Joint Funding Opportunity Announcement between
NIA-AoA
  • Consider partnering to apply for the
    Translational Research to Help Older Adults
    Maintain their Health and Independence in the
    Community (R01/R21)
  • See the full announcement at http//grants.nih.gov
    /grants/guide/pa-files/PA-11-123.html

8
welcome
  • Nina Silverberg, PhD
  • Assistant Director
  • Alzheimer's Disease Centers Program
  • Division of Neuroscience
  • National Institute on Aging
  • National Institutes of Health
  • U.S. Department of Health Human Services
  • (301) 496-9350
  • SilverbergN_at_mail.nih.gov 

9
http//www.nia.nih.gov/alzheimers/alzheimers-dise
ase-research-centers
  • NIA-funded Alzheimers
  • Disease Centers
  • ADCs conduct research on all aspects of
    Alzheimers Disease
  • Provide diagnosis and education services for
    patients and families
  • Opportunities to participate in research

10
  • Each AD center has
  • Administrative Core
  • Education Core
  • Clinical Core
  • Data Core
  • Neuropathology Core
  • Each also has its own focus,e.g.
  • Fronto-Temporal Degeneration
  • Specific diverse populations
  • Most also conduct clinical trials

11
http//www.adcs.org
  • Alzheimer's Disease
  • Cooperative Study (ADCS)
  • NIA-funded collaboration to facilitate the
    discovery, development and testing of new
    Alzheimers treatments
  • Conducts large, multi-site trials
  • Focus on drugs that might not be developed by
    industry

12
More than 70 sites across the US and
CanadaOverlaps with ADCs
Salt Lake City
13
Connecting the Aging Network to Clinical
Researchers at National Institute on Agings
Alzheimers Disease Centers
Diana R. Kerwin, MD Assistant Professor Cognitive
Neurology and Alzheimers Disease
Center Northwestern University
  • Raj C. Shah, MD
  • Associate Professor
  • Rush Alzheimers Disease Center
  • Rush University

14
Disclosures for Diana R. Kerwin, MD
  • I received funding and support as the Site PI for
    the Alzheimer Disease Cooperative Studies ADNI
    (NIA U01 AG024904) ,Forrest Laboratories Protocol
    NAM-MD-53-J and Lilly Research Laboratories
    Protocol H6L-MC-LFAN.
  • I have served on an Advisory Board for Neuronix
    and Pfizer. I serve on a Speaker Board for
    Novartis Pharmaceuticals.
  • I receive funding from the NIA funded CNADC,
    Co-Investigator on NIA U01 AG022376 and support
    from the Illinois Department of Public Health
    Alzheimers Disease Assistance Center Grant.

15
Disclosures Raj C. Shah, MD
  • I receive or have recently received research
    support from the NIH P30 AG101061 (Education and
    Information Transfer Core Leader), P01 AG009466
    (Co-investigator, Administrative Core), U01
    AG010483 (Site Investigator), U01AG024904 (Site
    Co-investigator), and U01 AG029824
    (Coinvestigator) and from the Illinois
    Department of Public Health Alzheimers Disease
    Assistance Center Grant.
  • I receive or have recently received research
    support as Site PI or Site Subinvestigator from
    Ceregene, Inc., Danone Research B.V., Eisai,
    Inc., Elan Pharmaceuticals,Inc., Genentech, Inc.,
    Merck Co., Inc., Metabolic Solutions
    Development Company, Pamlab, L.L.C., Orasi, Inc.,
    and Pfizer, Inc. and
  • I serve on the Board of Directors of the
    Alzheimers Association Greater Illinois
    Chapter
  • I recently served on a research advisory panel
    for Accera, Inc. and a Clinical Advisory Panel
    for Nutricia North America and serve on a
    research advisory panel for Merck Co., Inc.

16
Discussion Points
  • Where are the gaps in diagnosing, treating, and
    preventing Alzheimers disease?
  • Why we need to do clinical research in
    Alzheimers disease?
  • What is clinical research?
  • Who needs to be involved in clinical research?
  • How can we work together to support clinical
    research?

17
The Problem of Alzheimers Disease (AD)
  • Dementia due to AD causes significant suffering
  • About 5.4 million Americans have dementia due to
    AD
  • There are 15 million informal caregivers for
    persons with dementia due to AD
  • Dementia due to AD is the third most costly
    disease state behind heart disease and cancer in
    the United States (US)
  • Approximately 200 billion will be spent in the
    direct and indirect costs of care in 2012
  • AD is the sixth leading cause of death in the US
  • By 2050, it is estimated 16 million Americans
    will develop dementia due to AD

18
Where are the Gaps in Solving the AD Problem?
  • There is no proven prevention strategy.
  • There is no simple diagnostic test.
  • There is no cure for dementia due to AD
  • So, there is a lot of work to do.

19
Where are the Gaps in Solving the AD Problem?
  • What causes AD?
  • What risk factors for AD can be modified?
  • Are there markers to identify AD before symptoms
    show up?
  • What brings out the symptoms of the AD?
  • What are accelerators of dementia due to AD?

20
Why We Need to Do Research in AD?
  • Alleviating Fear
  • Providing Hope
  • Clearing a Path
  • Giving Direction

21
Why We Need to Do Research in AD?
  • Preventive
  • Prevent buildup of protein changes
  • Build brain reserve
  • Early changes prior to disease diagnosis
  • Delay transition to disease
  • Early Disease
  • Reverse or halt progress
  • Late Disease
  • Improve quality of life
  • Reduce caregiver burden

22
What is Clinical Research?
  • This type of research involves a particular
    person or group of people or uses materials from
    humans. This research can include
  • Studies of mechanisms of human disease
  • Studies of therapies or interventions for disease
  • Studies to develop new technology related to
    disease

23
What is a clinical trial?
  • Clinical trials are used to determine whether a
    medication or behavioral intervention are safe,
    efficacious, and effective.
  • This can include medications or an intervention
    to modify behavior (such as diet, physical
    activity, cognitive therapy, etc.)
  • Research with human subjects to develop or
    evaluate clinical laboratory tests (imaging or
    molecular diagnostic tests) might be considered
    as a clinical trial if the test will be used for
    medical decision making, or if the test itself
    imposes more than minimal risk for subjects.
    (ADNI study is an example of this)

24
Key points about clinical trials
  • Although very important, it is research and
    should be considered separate from a clinical
    treatment plan
  • In drug studies and other interventions, there is
    a placebo arm that is assigned randomly and
    neither the participant or physician will know if
    the participant receives treatment or placebo
  • Clinical research is a commitment of time by the
    participant and family member and the benefits
    are in advancing research and will not
    necessarily directly benefit the participants

25
What is Clinical Research?
  • A few examples of ongoing studies
  • 1. Risk Factors Genetics Initiative
  • 2. Diagnostics Alzheimers Disease
    Neuroimaging Initiative 2 (ADNI-2)
  • 3. Treatment Resveratrol

26
Genetics Initiative
  • Purpose of trial To determine the genes that
    play a role in late-life AD, and to learn more
    about the cause of AD how to prevent it. Blood
    samples will be collected from all participants.
  • Eligibility Two siblings who developed AD after
    60, and another family member over age 50 with
    memory loss, or a family member over age 60 with
    no memory loss. Participants can live anywhere
    in the US.
  • Duration of trial One encounter with every two
    year follow-up

27
ADNI-2
  • Purpose of trial To determine body fluid,
    genetic, and imaging biomarkers that may predict
    who is likely to develop Alzheimers disease.
  • Eligibility Individuals older than age 55 with
    memory concerns and no diagnosis of dementia will
    be followed with evaluations involving blood,
    urine, spinal fluid, and brain imaging and memory
    testing.
  • Duration of trial One visit every 6 months.

28
Resveratrol
  • Purpose of trial To determine if resveratrol
    therapy is better than placebo in delaying or
    altering the deterioration of memory and daily
    functioning in persons with Alzheimers.
  • Eligibility Persons over age 50 with an AD
    diagnosis who do not have diabetes or are
    currently taking Coumadin (warfarin).
  • Duration of trial Ten evaluations over the span
    of one year.

29
Who Needs to Be Involved in Clinical Research for
AD?
30
How Can We Work Together?
  • Research Centers Providing education about
    clinical research in AD prevention, diagnosis,
    and treatment
  • Aging Network Providing awareness and
    acceptance for participation in clinical research
    in AD prevention, diagnosis, and treatment
  • Together Connecting potential persons and
    caregivers to research options

31
Case ExampleASPirin in Reducing Events in the
Elderly
  • Purpose of trial To determine if treatment with
    low-dose aspirin is better than placebo in
    helping healthy older adults achieve
    disability-free longevity (i.e. living longer
    without developing dementia or functional
    disability).
  • Eligibility Healthy older persons over age 65
    with no current medical need to be on aspirin
    therapy.
  • Duration of trial Annual evaluations for five
    years.

32
Case ExampleASPirin in Reducing Events in the
Elderly
  • Sponsor National Institute on Aging
  • Number of Participants Required 19,000.
  • Where Participants Being Recruited 13,000 in
    Australia 6000 in United States.
  • Focus in United States Make sure results
    applicable to all healthy older persons of
    various race/ethnicity, including but not limited
    to African-American, Latino, and Asian.
  • Sites Over 30 centers in the United States
  • More Information www.aspree.org

33
How Can We Work Together?
  • Research Centers
  • Available to give presentations to Aging Network
    staff about what research is about.
  • Available to give community presentations
    requested by Aging Network
  • Available for questions about research for
    potential participants
  • Make it easy to access research options

34
How Can We Work Together?
  • Aging Network
  • Encourage frontline staff to be capable of
    advising clients about research as an option for
    caregivers, persons at risk for AD, and persons
    with AD
  • Work with diverse community leaders to break down
    barriers to potential research participation

35
How Can We Work Together?
  • Research Centers and Aging Network
  • Sharing best practices on what works and what
    does not work
  • Figuring out efficient ways for link caregivers,
    persons at risk for AD, and persons with AD to
    each group

36
How to Actively Connect?
  • See and hear next presentations,
  • http//www.alz.org (TrialMatch)
  • http//www.nia.nih.gov/alzheimers (ADEAR),
  • Other options
  • Alzheimers Disease Information Network (AD-IN)
    by the NIA Alzheimers Disease Cooperative
    Studys national Information Network at
    http//www.adcs.org
  • http//www.clinicaltrials.gov

37
Contact Information
  • Diana R. Kerwin, MD
  • Cognitive Neurology and Alzheimer's Disease
    Center
  • Northwestern University
  • 645 N Michigan Avenue, Suite 630Chicago, IL
    60611E-mail d-kerwin_at_northwestern.edu
  • Clinical office 312-695-9627

38
Contact Information
  • Raj Shah, MD
  • Rush Alzheimers Disease Center
  • Rush University Medical Center
  • 600 South Paulina, Suite 1022
  • Chicago, IL 60612
  • E-mail Raj_C_Shah_at_rush.edu

39
http//www.nia.nih.gov/alzheimers
  • NIAs ADEAR Center Website features
  • AD Research Centers
  • Clinical Trials
  • Alzheimers research news
  • Alzheimers topics
  • Symptoms, Diagnosis, Treatment, Research, more
  • E-alert Sign-up
  • Free publications

40
http//www.nia.nih.gov/alzheimers/topics/research
  • Free Fact Sheet

41
http//www.nia.nih.gov/alzheimers/clinical-trials
  • NIA ADEAR Search for Alzheimers Clinical Trials
  • Find trials by
  • Location
  • Eligibility criteria
  • Drugs tested
  • Featured trials
  • ADEAR phone support1-800-438-4380
  • Sign up to receive e-alerts, RSS when new trials
    posted/updated

42
  • NIA ADEAR Alzheimers trial detail page
  • User-friendly description
  • Map and listing of sites with contact information
  • Inclusion/exclusion criteria

43
http//www.clinicaltrials.gov
  • NIH ClinicalTrials.gov
  • Registry for almost all clinical trials
  • Comprehensive source for other databases
  • Searchable
  • Screen shot

44
http//clinicalresearchtrials.nih.gov/
  • NIH Clinical Research Trials and You
  • Trans-NIH collaboration to promote research
    participation awareness
  • Personal stories from participants, researchers
  • Downloadable promo materials (posters, flyers,
    slides) for community education

45
https//www.researchmatch.org/
  • ResearchMatch
  • NIH-funded initiative to connect interested
    research participants with researchers
  • Free, secure registry
  • Studies contact registry participants when there
    is a match

46
  • Questions? Contact ADEAR
  • Call toll-free1-800-438-4380Mon-Fri, 830
    am-500 pm Eastern Time
  • or emailadear_at_nia.nih.gov

47

48
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49
TrialMatch Objectives
  • Move science forward towards a world without
    Alzheimers
  • Increase the numbers of individuals enrolled in
    Alzheimers trials and studies
  • Provide information to the public and healthcare
    professionals to help facilitate Alzheimers
    clinical trial enrollment
  • Educate caregivers and people with dementia about
    Association support programs

50
Overview How TrialMatch Works
  • 1) Individual completes a profile online or over
    the phone. (Person with the disease, healthy
    volunteer, caregiver or physician)
  • 2) The database takes the information in the
    profile, compares it to the match criteria housed
    in the database and presents a list of trials
    that are potential matches.

51
Overview How TrialMatch Works
  • 3) The individual can then select the trials they
    are most interested in and connect with a
    TrialMatch Coordinator to get the contact
    information for the trial site.
  • 4) Over the following weeks and months,
    TrialMatch Coordinators follow up with
    constituents to assist with any challenges or
    questions that come up and to track outcomes.

52
TrialMatch What does it contain?
  • Types of Trials
  • Questionnaire types
  • Alzheimers, Related Dementia, and Mild Cognitive
    Impairment (MCI) trials
  • Pharmacological (Drug) and Non-Pharmacological
    (Non-Drug) Studies
  • U. S. and Canadian Trials
  • Person with dementia
  • Caregiver
  • Healthy Volunteer

53
What types of trials are available?
  • Treatment Trials
  • Diagnostic Studies
  • Prevention Trials
  • Screening Studies
  • Quality of Life Studies

54
Where do the listings come from?
  • Clinicaltrials.gov
  • Directly from Researchers

55
Who Can Benefit from Using TrialMatch?
  • Persons living with the Alzheimers Disease,
    Related dementias, Mild Cognitive Impairment
  • Caregivers
  • Healthy Volunteers
  • Physicians Researchers

56
TrialMatch Service Benefits
57
  • Alzheimers Association TrialMatch is funded
    solely by the Alzheimers Association and
    includes all applicable studies without
    preference to any study sponsor.
  • No recruitment fees or other compensation is
    collected for clinical trial enrollment.

58
  • Web Address alz.org/trialmatch
  • Phone 1.800.272.3900

59
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