Advisory Council February 2017 Meeting Presentation: Alzheimer's Association TrialMatch

02/03/2017

ADVISORY COUNCIL ON ALZHEIMER'S RESEARCH, CARE, AND SERVICES

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

  1. A person with the dementia, caregiver, or healthy volunteer completes a profile via internet or phone.
  2. Their unique profile is compared to structured match criteria, and the user is given a customized list of matching studies.
  3. The user then selects the studies that are of most interest to them; results are sorted by study type and by distance from home
  4. 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

Study description screen shot.
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

Second Pass Matching screen shot.
http://www.alz.org/trialmatch

Study Sources: Clinicaltrials.gov and User Submitted

TrialMatch Listing Request Form screen shot.
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

Bar Chart.

User and Study Ages

Caregiver Status
Bar Chart.

Promoting Clinical Trial Participation

Promoting Clinical Trial Participation screen shot.
http://www.alz.org/research/clinical_trials/find_clinical_trials_trialmatch.asp

TrialMatch User Growth

220,000 users
Line Chart.

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

Spanish Language Promotion screen shot.
http://www.alz.org/espanol/treatment/estudios_clinicos.asp

Spanish Language Promotion

Spanish Language Promotion screen shot.
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

Alzheimer’s Association Research Website screen shot.
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

 

Handouts

 

Presentation Slides

 

Videos

  • 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]