Literature DB >> 24614272

Community engagement in diverse populations for Alzheimer disease prevention trials.

Heather R Romero1, Kathleen A Welsh-Bohmer, Lisa P Gwyther, Henry L Edmonds, Brenda L Plassman, Cassandra M Germain, Michelle McCart, Kathleen M Hayden, Carl Pieper, Allen D Roses.   

Abstract

The recruitment of asymptomatic volunteers has been identified as a critical factor that is delaying the development and validation of preventive therapies for Alzheimer disease (AD). Typical recruitment strategies involve the use of convenience samples or soliciting participation of older adults with a family history of AD from clinics and outreach efforts. However, high-risk groups, such as ethnic/racial minorities, are traditionally less likely to be recruited for AD prevention studies, thus limiting the ability to generalize findings for a significant proportion of the aging population. A community-engagement approach was used to create a registry of 2311 research-ready, healthy adult volunteers who reflect the ethnically diverse local community. Furthermore, the registry's actual commitment to research was examined, through demonstrated participation rates in a clinical study. The approach had varying levels of success in establishing a large, diverse pool of individuals who are interested in participating in pharmacological prevention trials and meet the criteria for primary prevention research trials designed to delay the onset of AD. Our efforts suggest that entry criteria for the clinical trials need to be carefully considered to be inclusive of African Americans, and that sustained effort is needed to engage African Americans in pharmacological prevention approaches.

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Year:  2014        PMID: 24614272      PMCID: PMC4139415          DOI: 10.1097/WAD.0000000000000029

Source DB:  PubMed          Journal:  Alzheimer Dis Assoc Disord        ISSN: 0893-0341            Impact factor:   2.703


  14 in total

1.  Developing a national strategy to prevent dementia: Leon Thal Symposium 2009.

Authors:  Zaven S Khachaturian; Deborah Barnes; Richard Einstein; Sterling Johnson; Virginia Lee; Allen Roses; Mark A Sager; William R Shankle; Peter J Snyder; Ronald C Petersen; Gerard Schellenberg; John Trojanowski; Paul Aisen; Marilyn S Albert; John C S Breitner; Neil Buckholtz; Maria Carrillo; Steven Ferris; Barry D Greenberg; Michael Grundman; Ara S Khachaturian; Lewis H Kuller; Oscar L Lopez; Paul Maruff; Richard C Mohs; Marcelle Morrison-Bogorad; Creighton Phelps; Eric Reiman; Marwan Sabbagh; Mary Sano; Lon S Schneider; Eric Siemers; Pierre Tariot; Jacques Touchon; Bruno Vellas; Lisa J Bain
Journal:  Alzheimers Dement       Date:  2010-03       Impact factor: 21.566

Review 2.  Drug development, clinical trials, cultural heterogeneity in Alzheimer disease: the need for pro-active recruitment.

Authors:  Lon S Schneider
Journal:  Alzheimer Dis Assoc Disord       Date:  2005 Oct-Dec       Impact factor: 2.703

3.  Recruitment of a community-based cohort for research on diversity and risk of dementia.

Authors:  Ladson Hinton; Kimberly Carter; Bruce R Reed; Laurel Beckett; Esther Lara; Charles DeCarli; Dan Mungas
Journal:  Alzheimer Dis Assoc Disord       Date:  2010 Jul-Sep       Impact factor: 2.703

4.  The Consortium to Establish a Registry for Alzheimer's Disease (CERAD). Part V. A normative study of the neuropsychological battery.

Authors:  K A Welsh; N Butters; R C Mohs; D Beekly; S Edland; G Fillenbaum; A Heyman
Journal:  Neurology       Date:  1994-04       Impact factor: 9.910

Review 5.  Alzheimer's Prevention Initiative: a plan to accelerate the evaluation of presymptomatic treatments.

Authors:  Eric M Reiman; Jessica B S Langbaum; Adam S Fleisher; Richard J Caselli; Kewei Chen; Napatkamon Ayutyanont; Yakeel T Quiroz; Kenneth S Kosik; Francisco Lopera; Pierre N Tariot
Journal:  J Alzheimers Dis       Date:  2011       Impact factor: 4.472

6.  Memantine treatment in patients with moderate to severe Alzheimer disease already receiving donepezil: a randomized controlled trial.

Authors:  Pierre N Tariot; Martin R Farlow; George T Grossberg; Stephen M Graham; Scott McDonald; Ivan Gergel
Journal:  JAMA       Date:  2004-01-21       Impact factor: 56.272

Review 7.  Increasing ethnic minority participation in Alzheimer disease research.

Authors:  Jason T Olin; Karen S Dagerman; Lauren S Fox; Beth Bowers; Lon S Schneider
Journal:  Alzheimer Dis Assoc Disord       Date:  2002       Impact factor: 2.703

8.  Recruitment of participants for the multiple risk factor intervention trial (MRFIT).

Authors:  J D Neaton; R H Grimm; J A Cutler
Journal:  Control Clin Trials       Date:  1987-12

9.  Chronic disease long-term drug prevention trials: lessons from the Alzheimer's Disease Anti-inflammatory Prevention Trial (ADAPT).

Authors:  Curtis L Meinert; John C S Breitner
Journal:  Alzheimers Dement       Date:  2007-12-21       Impact factor: 21.566

10.  Autosomal-dominant Alzheimer's disease: a review and proposal for the prevention of Alzheimer's disease.

Authors:  Randall J Bateman; Paul S Aisen; Bart De Strooper; Nick C Fox; Cynthia A Lemere; John M Ringman; Stephen Salloway; Reisa A Sperling; Manfred Windisch; Chengjie Xiong
Journal:  Alzheimers Res Ther       Date:  2011-01-06       Impact factor: 6.982

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  15 in total

1.  GeneMatch: A novel recruitment registry using at-home APOE genotyping to enhance referrals to Alzheimer's prevention studies.

Authors:  Jessica B Langbaum; Jason Karlawish; J Scott Roberts; Elisabeth M Wood; Angela Bradbury; Nellie High; Trisha L Walsh; David Gordon; Raj Aggarwal; Peter Davis; Carter Stowell; Lane Trisko; Carolyn M Langlois; Eric M Reiman; Pierre N Tariot
Journal:  Alzheimers Dement       Date:  2019-02-13       Impact factor: 21.566

2.  Attitudes toward Potential Participant Registries.

Authors:  Joshua D Grill; Andrew Holbrook; Aimee Pierce; Dan Hoang; Daniel L Gillen
Journal:  J Alzheimers Dis       Date:  2017       Impact factor: 4.472

3.  Challenging Assumptions About African American Participation in Alzheimer Disease Trials.

Authors:  Richard E Kennedy; Gary R Cutter; Guoqiao Wang; Lon S Schneider
Journal:  Am J Geriatr Psychiatry       Date:  2017-04-25       Impact factor: 4.105

Review 4.  Dementia registries around the globe and their applications: A systematic review.

Authors:  Karolina Krysinska; Perminder S Sachdev; John Breitner; Miia Kivipelto; Walter Kukull; Henry Brodaty
Journal:  Alzheimers Dement       Date:  2017-05-30       Impact factor: 21.566

5.  "From Victimhood to Warriors": Super-researchers' Insights Into Alzheimer's Disease Clinical Trial Participation Motivations.

Authors:  Shoshana H Bardach; Kelly Parsons; Allison Gibson; Gregory A Jicha
Journal:  Gerontologist       Date:  2020-05-15

6.  A Survey of Knowledge and Views Concerning Genetic and Amyloid PET Status Disclosure.

Authors:  B R Ott; M A Pelosi; G Tremont; P J Snyder
Journal:  Alzheimers Dement (N Y)       Date:  2016-01-01

7.  Quantifying Recruitment Source and Participant Communication Preferences for Alzheimer's Disease Prevention Research.

Authors:  D Julbe-Delgado; J L O'Brien; R Abdulkarim; E M Hudak; H Maeda; J D Edwards
Journal:  J Prev Alzheimers Dis       Date:  2021

8.  Alzheimer Disease Worries, Fears, and Stigma and Their Relationship to Genetic and Interventional Research Engagement.

Authors:  Shoshana H Bardach; Saida Kent; Gregory A Jicha
Journal:  Alzheimer Dis Assoc Disord       Date:  2021 Jan-Mar 01       Impact factor: 2.357

9.  Recruiting to preclinical Alzheimer's disease clinical trials through registries.

Authors:  Joshua D Grill
Journal:  Alzheimers Dement (N Y)       Date:  2017-06

10.  African Americans are less likely to enroll in preclinical Alzheimer's disease clinical trials.

Authors:  Yan Zhou; David Elashoff; Sarah Kremen; Edmond Teng; Jason Karlawish; Joshua D Grill
Journal:  Alzheimers Dement (N Y)       Date:  2016-10-15
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