Friday, February 3, 2017
Printer Friendly Version in PDF Format (23 PDF pages)
Alzheimer's Association TrialMatch
Keith Fargo, PhD
Director of Scientific Programs
Alzheimer's Association
How TrialMatch Works
- A person with the dementia, caregiver, or healthy volunteer completes a profile via internet or phone.
- Their unique profile is compared to structured match criteria, and the user is given a customized list of matching studies.
- The user then selects the studies that are of most interest to them; results are sorted by study type and by distance from home
- The user then contacts the study team directly, if they find a matching study that interests them.
User Experience
- Works on computers and mobile devices
- Phone agents available 8 am to 8 pm, M-F
- Studies are presented in order of proximity to nearest study site
- Studies organized into treatment, prevention, online, etc.
- Studies can be bookmarked for easy viewing later
Study Descriptions
http://www.alz.org/trialmatch |
Second Pass Matching
When a new study is added, an email is sent to existing TrialMatch users within 200 miles of site
http://www.alz.org/trialmatch |
Study Sources: Clinicaltrials.gov and User Submitted
https://www.alz.org/research/downloads/TrialMatch-RequestForm.pdf |
2016 Study and Site Numbers
- 275 average number of studies listed on TrialMatch (377 total throughout year)
- 675 average number of unique study sites
- 1330 average number of study-site combinations
Studies by Participant Type
User and Study Ages
Caregiver Status |
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Promoting Clinical Trial Participation
http://www.alz.org/research/clinical_trials/find_clinical_trials_trialmatch.asp |
TrialMatch User Growth
220,000 users |
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2016 User Numbers
- 55,987 new accounts created
- 35,890 (~65%) via postcards
- 22,367 (~40%) completed a profile and reviewed match results
- 15,050 clicked to view at least on study summary (average of 3 each)
2016 Q3/Q4 Second Pass Matching Numbers
- 39 second pass matching campaigns
- 39,690 people
- 26.3% unique open rate
- 37.1% click through rate
Challenges for the Future
- Engaging participants in preclinical/prodromal phase
- Increasing participation of diverse individuals
Alzheimer's Association: Funding Prevention Trials
- Dominantly Inherited Alzheimer Network Trials Unit
- Alzheimer's Prevention Initiative
Spanish Language Promotion
http://www.alz.org/espanol/treatment/estudios_clinicos.asp |
Spanish Language Promotion
https://www.alz.org/espanol/downloads/trialMatch-postal-informativa.pdf |
FY2016 Growth of Diverse TrialMatch Users
- 40% year-over-year for all users
- 59% for racially/ethnically diverse users
- FY15: 1,425
- FY16: 2,272
Alzheimer's Association Research Website
http://www.alz.org/research/overview.asp |
THE END OF ALZHEIMER'S STARTS WITH YOU
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 https://aspe.hhs.gov/advisory-council-alzheimers-research-care-and-services-meetings#Feb2017.
Comments and questions, or alerts to broken links, should be sent to napa@hhs.gov.
General Information
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Agenda -- [HTML Version] [PDF Version]
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Meeting Announcement -- [HTML Version] [PDF Version]
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Meeting Summary -- [HTML Version] [PDF Version]
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Public Comments -- [HTML Version]
Handouts
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Panelist Bios -- [HTML Version] [PDF Version]
Presentation Slides
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2017 Recommendations -- [HTML Version] [PDF Version]
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Alzheimer's Association TrialMatch -- [HTML Version] [PDF Version]
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Clinical Services Subcommittee Federal Update -- [HTML Version] [PDF Version]
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Clinical Studies Recruitment Strategy -- [HTML Version] [PDF Version]
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Development and Use of Registries to Accelerate Enrollment into Alzhiemer's Trials -- [HTML Version] [PDF Version]
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Long-Term Services and Supports Committee Update -- [HTML Version] [PDF Version]
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National Recruitment Strategy -- [HTML Version] [PDF Version]
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NINDS Update -- [HTML Version] [PDF Version]
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Randomized Controlled Trials for Alzheimer's Disease -- [HTML Version] [PDF Version]
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Strategies to Facilitate Recruitment and Screening for Alzheimer's Clinical Trials -- [HTML Version] [PDF Version]
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Transforming AD Therapy Development -- [HTML Version] [PDF Version]
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Update National Research Summit on Care, Services and Supports for Persons with Dementia and Their Caregivers -- [HTML Version] [PDF Version]