CADRE Collaborative Alzheimer Disease Research Exchange Mary Guerriero Austrom, PhD Jennifer Bachman, MEd

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    27-Dec-2015

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  • CADRE Collaborative Alzheimer Disease Research ExchangeMary 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 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 reasonsAccessTimeFundingExpertiseRelationships

  • Alzheimers AssociationProvide 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

  • CADREDeveloped through the ideas generated at the last IDND meetingPilot project proposal is in progress to submit the Roybal Center at IU CAR by the end of week

  • Specific AimsDevelop a collaborative system to identify, inform and recruit potential participants to AD research projects through the Alzheimers Association Helpline. a.Determine criteria that leads to successful recruitment and follow-up versus an unsuccessful attemptb.Identify the best mechanism to share or link willing research participants with researchers.

  • Specific Aims2.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/Vb.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 StudyCurrent pilot study the IADC Education Core has undertaken with AAGI and the U of I CAC:Can recruit using Helpline Staff/VolunteersN=55 completed baseline interviewsCurrently half-way through6-month follow-up phaseN=21completed follow-up interviews

  • Lessons LearnedS/V became comfortable asking if caller was interested in researchFirst time callers to Helpline are not put off by the question about research participationA key feature of the Helpline is the rapport and relationship that quickly develops between the caregiver and S/V answering the call

  • Lessons LearnedThe 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.

  • ChallengesBoth 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.

  • ChallengesMultiple 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 AAGIStaff/volunteers like to provide services6-month trial will likely be acceptable but on-going research recruitment will involve a shift in cultureNationally this may be a direction the group is headed Puts our chapter and collaborators [IADC] ahead of the curve

  • Figure 1: CADRE Study DesignCall received by the AA helplineService provided by staff or volunteerYes: Ask if caller interested in research opportunities?YES: Read script about research gateways (IDND web site, information packet by mail)NO: Ask whyAnalyze responses for trends or patternsAdd information packet to regular AA mailerAt 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 callers contact informationNO: Ask whyAnalyze responses for trends or patternsFollow 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 DesignCall received by the AA HelplineHelpline service provided by staff or volunteerYes: 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 patternsAdd information packet to regular AA mailerIs 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 callers contact informationNO: Ask whyAnalyze responses for trends or patternsFollow up with study coordinator to track success. Track variables associated with successful vs. unsuccessful recruitment (1-3 months)

  • Time LineMonths 1-2 IRB approvalBegin training and culture shift at AAGI [this is ongoing]Months 3-9 month recruitmentMonths 10-12Data analysis Write larger proposal

  • Comments and suggestions

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