CADRE Collaborative Alzheimer Disease Research Exchange
Mary Guerriero Austrom, PhDJennifer Bachman, MEd
CADRE* From Merriam-Webster:
1 FRAME, FRAMEWORK 2 a nucleus or core group especially of trained personnel able to assume control and to train others; broadly : a group of people having some unifying relationship <a cadre of lawyers> [a cadre of clinician/researchers]
3 a cell of indoctrinated leaders active in promoting the interests of a revolutionary party
* Thank you Bridget
IDND Members
Mary AustromJennifer BachmanMartin FarlowPaula TrzpeczBridget FultzMalaz BoustaniStephanie Munger
Key IssuesRecruitment to dementia research projects
is challenging and costlyResearchers have limited reach to
potential participants for various reasons Access Time Funding Expertise Relationships
Alzheimer’s Association
Provide services statewide Have access to family members and
persons with dementia [pwd] via their network of services
Have or develop a relationship with the families and pwd via their services
CADRE
Developed through the ideas generated at the last IDND meeting
Pilot project proposal is in progress to submit the Roybal Center at IU CAR by the end of week
Specific Aims1. Develop a collaborative system to identify,
inform and recruit potential participants to AD research projects through the Alzheimer’s Association Helpline.
a. Determine criteria that leads to successful recruitment and follow-up versus an unsuccessful attempt
b. Identify the best mechanism to share or link willing research participants with researchers.
Specific Aims
2. Assess the feasibility and acceptability of recruitment through the AA Helpline using well-trained S/Vas recruiters.
a. Evaluate the effectiveness of the training program for Helpline S/V
b. Evaluate the effectiveness of the culture change process with the S/V
Preliminary DataEffects of AA Core Services on Family Caregiver Well-being: A Collaborative Study
Current pilot study the IADC Education Core has undertaken with AAGI and the U of I CAC: Can recruit using Helpline Staff/Volunteers N=55 completed baseline interviews Currently half-way through6-month follow-
up phase N=21completed follow-up interviews
Lessons Learned
S/V became comfortable asking if caller was interested in research
First time callers to Helpline are not put off by the question about research participation
A key feature of the Helpline is the rapport and relationship that quickly develops between the caregiver and S/V answering the call
Lessons Learned The longer the Helpline service, the more receptive
the caller seemed to be willing to participate. Staff that spent the most time answering the helpline
had the highest number of recruits and the highest percentage of completed baseline interviews.
Staff felt a stronger commitment to being successful because they felt recruiting participants to the pilot study was job related.
Increased training/modeling of recruitment questions by phone and consistent internal quality control is necessary.
Challenges Both S/V reported some callers may have felt
obligated to say “Yes” although it was critical to AAGI that this not happen.
Decision making process in considering research participation needs to be further examined.
7 different people answered the Helpline and used differing judgments about asking the question despite the availability of a carefully worded script and protocol.
Challenges
Multiple IRBs presented challenges and created delays in contacting participants [need to shorten this time interval]
5 calls to participants may be the upper limit in attempts to contact
Proposal will include:
Training--increased and on-goingCulture shift at the AAGI
Staff/volunteers like to provide services 6-month trial will likely be acceptable but
on-going research recruitment will involve a shift in culture
Nationally this may be a direction the group is headed
Puts our chapter and collaborators [IADC] ahead of the curve
Figure 1: CADRE Study Design
Call received by the AA helpline
Service provided by staff or volunteer
Yes: Ask if caller interested in research opportunities?
YES: Read script about research gateways (IDND web site, information
packet by mail)
NO: Ask why
Analyze responses for trends or patterns
Add information packet to regular AA mailer
At 2 weeks follow-up call to ask: Did you receive information in mail? Did you visit the web site? Are you
interested in a particular study? May we give your contact information to a particular study?
YES: Give study coordinator caller’s contact information
NO: Ask why
Analyze responses for trends or patterns
Follow up with study coordinator to track success. Track variables associated with successful vs. unsuccessful recruitment (1-3 months)
Is caller a pwd or family caregiver? NO: usual service
Figure 1: CADRE Study Design
Call received by the AA Helpline
Helpline service provided by staff or volunteer
Yes: Ask if caller interested in research opportunities?
Read script about research gateways (IDND web site, information packet by
mail)
NO: Ask why?
Record all responses.Analyze for trends or
patterns
Add information packet to regular AA mailer
Is the caller a person with AD/dementia or a family caregiver? NO: usual service
Figure 1: CADRE Study DesignAt 2 weeks follow-up call as per regular service. Plus ask:
Did you receive information in mail? Did you visit the web site? Are you interested in a particular study? May we give your contact information to a particular study?
YES: Give study coordinator caller’s contact information NO: Ask why
Analyze responses for trends or
patternsFollow up with study coordinator to track success. Track variables associated with successful vs. unsuccessful recruitment (1-3 months)
Time Line
Months 1-2 IRB approval Begin training and culture shift at
AAGI [this is ongoing]Months 3-9 month recruitmentMonths 10-12
Data analysis Write larger proposal
Comments and suggestions