Facilitating alzheimer disease research recruitment

Alzheimer Disease and Associated Disorders

Volumn 28, Issue 1, 2014, Pages 1-8

  Grill, Joshua D ^a   Galvin, James E ^b  

^a UNIVERSITY OF CALIFORNIA   (United States)

^b NEW YORK UNIVERSITY MEDICAL CENTER   (United States)

Author keywords

Alzheimer disease; clinical trials; community based participatory research; recruitment; registries; research participation

Indexed keywords

ALZHEIMER DISEASE; COMMUNITY-BASED PARTICIPATORY RESEARCH; HUMANS; PATIENT SELECTION; REGISTRIES;

EID: 84894471877     PISSN: 08930341     EISSN: None     Source Type: Journal    
DOI: 10.1097/WAD.0000000000000016     Document Type: Review

References (66)

1. Grill JD, Karlawish J. Addressing the challenges to successful recruitment and retention in Alzheimer's disease clinical trials. Alzheimers Res Ther. 2010;2:34.
2. Grill JD, Monsell S, Karlawish J. Are patients whose study partners are spouses more likely to be eligible for Alzheimer's disease clinical trials? Dement Geriatr Cogn Disord. 2012;33:334-340.
3. Schneider LS, Olin JT, Lyness SA, et al. Eligibility of Alzheimer's disease clinic patients for clinical trials. J Am Geriatr Soc. 1997;45:923-928.
4. Levy MI, Mohs RC, Rosen WG, et al. Research subject recruitment for gerontological studies of pharmacological agents. Neurobiol Aging. 1982;3:77-79.
5. Treves TA, Verchovsky R, Klimovitsky S, et al. Recruitment rate to drug trials for dementia of the Alzheimer type. Alzheimer Dis Assoc Disord. 2000;14:209-211.
6. Karlawish JH, Casarett D, Klocinski J, et al. How do AD patients and their caregivers decide whether to enroll in a clinical trial? Neurology. 2001;56:789-792.
7. Karlawish J, Cary MS, Rubright J, et al. How redesigning AD clinical trials might increase study partners' willingness to participate. Neurology. 2008;71:1883-1888.
8. Connell CM, Shaw BA, Holmes SB, et al. Caregivers' attitudes toward their family members' participation in Alzheimer disease research: implications for recruitment and retention. Alzheimer Dis Assoc Disord. 2001;15:137-145.
9. Alzheimer's Association and National Alliance for Caregiving. Families care: Alzheimer's disease caregiving in the United States, 2004. Available at: http://www.alz.org. Accessed June 1, 2013.
10. Grill JD, Raman R, Ernstrom K, et al. Effect of study partner on the conduct of Alzheimer disease clinical trials. Neurology. 2013;80:282-288.
11. Faison WE, Schultz SK, Aerssens J, et al. Potential ethnic modifiers in the assessment and treatment of Alzheimer's disease: challenges for the future. Int Psychogeriatr. 2007;19:539-558.
12. Napoles AM, Chadiha L, Eversley R, et al. Reviews: developing culturally sensitive dementia caregiver interventions: are we there yet? Am J Alzheimer Dis Other Dement. 2010;25:389-406.
13. National Plan to Address Alzheimer's. Health and Human Services, 2012. Available at: http://aspe.hhs.gov/daltcp/napa/ NatlPlan.pdf.
14. McKhann GM, Knopman DS, Chertkow H, et al. The diagnosis of dementia due to Alzheimer's disease: recommendations from the National Institute on Aging-Alzheimer's Association workgroups on diagnostic guidelines for Alzheimer's disease. Alzheimer Dement. 2011;7:263-269.
15. Albert MS, DeKosky ST, Dickson D, et al. The diagnosis of mild cognitive impairment due to Alzheimer's disease: recommendations from the National Institute on Aging-Alzheimer's Association workgroups on diagnostic guidelines for Alzheimer's disease. Alzheimer Dement. 2011;7:270-279.
16. Sperling RA, Aisen PS, Beckett LA, et al. Toward defining the preclinical stages of Alzheimer's disease: recommendations from the National Institute on Aging-Alzheimer's Association workgroups on diagnostic guidelines for Alzheimer's disease. Alzheimer Dement. 2011;7:280-292.
17. Etkin CD, Farran CJ, Barnes LL, et al. Recruitment and enrollment of caregivers for a lifestyle physical activity clinical trial. Res Nurs Health. 2012;35:70-81.
18. VanDevanter N, Kwon S, Sim SC, et al. Evaluation of community-academic partnership functioning: center for the elimination of hepatitis B health disparities. Prog Community Health Partnersh. 2011;5:223-233.
19. Bachman DL, Stuckey M, Ebeling M, et al. Establishment of a predominantly African-American cohort for the study of Alzheimer's disease: the South Carolina Alzheimer's disease clinical core. Dement Geriatr Cogn Disord. 2009;27:329-336.
20. Data PK, Alzheimer's Association. A Study of Primary Care Physicians Regarding Their Attitudes Toward Alzheimer's Disease Clinical Trials. 2007.
21. Jones RW, Andrieu S, Knox S, et al. Physicians and caregivers: ready and waiting for increased participation in clinical research. J Nutr Health Aging. 2010;14:563-568.
22. Galvin JE, Meuser TM, Boise L, et al. Predictors of Physician Referral for Patient Recruitment to Alzheimer Disease Clinical Trials. Alzheimer Dis Assoc Disord. 2009;23:352-356.
23. Carr SA, Davis R, Spencer D, et al. Comparison of recruitment efforts targeted at primary care physicians versus the community at large for participation in Alzheimer disease clinical trials. Alzheimer Dis Assoc Disord. 2010;24:165-170.
24. Galvin JE, Meuser TM, Morris JC. Improving physician awareness of Alzheimer disease and enhancing recruitment: the Clinician Partners Program. Alzheimer Dis Assoc Disord. 2012;26:61-67.
25. Carrie I, Van Kan GA, Gillette-Guyonnet S, et al. Recruitment strategies for preventive trials. The MAPT study (Multi- Domain Alzheimer Preventive Trial). J Nutr Health Aging. 2012;16:355-359.
26. Schneider LS. Recruitment methods for United States Alzheimer disease prevention trials. J Nutr Health Aging. 2012;16:331-335.
27. Meinert CL, Breitner JC. Chronic disease long-term drug prevention trials: lessons from the Alzheimer's Disease Antiinflammatory Prevention Trial (ADAPT). Alzheimer Dement. 2008;4(1 suppl 1):S7-S14.
28. Meinert CL, McCaffrey LD, Breitner JC. Alzheimer's Disease Anti-inflammatory prevention trial: design, methods, and baseline results. Alzheimer Dement. 2009;5:93-104.
29. Fitzpatrick AL, Fried LP, Williamson J, et al. Recruitment of the elderly into a pharmacologic prevention trial: the Ginkgo Evaluation of Memory Study experience. Contempor Clin Trial. 2006;27:541-553.
30. Andersen F, Engstad TA, Straume B, et al. Recruitment methods in Alzheimer's disease research: general practice versus population based screening by mail. BMC Med Res Methodol. 2010;10:35.
31. Lines CR, McCarroll KA, Lipton RB, et al. Telephone screening for amnestic mild cognitive impairment. Neurology. 2003;60:261-266.
32. Austrom MG, Bachman J, Altmeyer L, et al. A collaborative Alzheimer disease research exchange using a community-based Helpline as a recruitment tool. Alzheimer Dis Assoc Disord. 2010;24(suppl):S49-S53.
33. Ortiz F, Fitten LJ. Barriers to healthcare access for cognitively impaired older Hispanics. Alzheimer Dis Assoc Disord. 2000; 14:141-150.
34. Mehta KM, Yin M, Resendez C, et al. Ethnic differences in acetylcholinesterase inhibitor use for Alzheimer disease. Neurology. 2005;65:159-162.
35. Tappen RM, Gibson SE, Williams CL. Explanations of AD in ethnic minority participants undergoing cognitive screening. Am J Alzheimer Dis Other Dement. 2011;26:334-339.
36. Hinton L, Franz CE, Yeo G, et al. Conceptions of dementia in a multiethnic sample of family caregivers. J Am Geriatr Soc. 2005;53:1405-1410.
37. Connell CM, Scott Roberts J, McLaughlin SJ, et al. Racial differences in knowledge and beliefs about Alzheimer disease. Alzheimer Dis Assoc Disord. 2009;23:110-116.
38. Roberts JS, Connell CM, Cisewski D, et al. Differences between African Americans and whites in their perceptions of Alzheimer disease. Alzheimer Dis Assoc Disord. 2003;17:19-26.
39. Ballard EL, Gwyther LP, Edmonds HL. Challenges and opportunities: recruitment and retention of African Americans for Alzheimer disease research: lessons learned. Alzheimer Dis Assoc Disord. 2010;24(suppl):S19-S23.
40. Williams MM, Scharff DP, Mathews KJ, et al. Barriers and Facilitators of African American Participation in Alzheimer Disease Biomarker Research. Alzheimer Dis Assoc Disord. 2010;24(Suppl):S24-S29.
41. Dilworth-Anderson P, Thaker S, Burke JM. Recruitment strategies for studying dementia in later life among diverse cultural groups. Alzheimer Dis Assoc Disord. 2005;19:256-260.
42. O'Fallon LR, Dearry A. Community-based participatory research as a tool to advance environmental health sciences. Environ Health Perspect. 2002;110(suppl 2):155-159.
43. Dilworth-Anderson P, Williams IC, Gibson BE. Issues of race, ethnicity, and culture in caregiving research: a 20-year review (1980-2000). Gerontologist. 2002;42:237-272.
44. Sood JR, Stahl SM. Community engagement and the resource centers for minority aging research. Gerontologist. 2011;51(suppl 1):S5-S7.
45. Williams MM, Meisel MM, Williams J, et al. An interdisciplinary outreach model of African American recruitment for Alzheimer's disease research. Gerontologist. 2011;51(suppl 1): S134-S141.
46. Chao S, Roberts JS, Marteau TM, et al. Health behavior changes after genetic risk assessment for Alzheimer disease: the REVEAL Study. Alzheimer Dis Assoc Disord. 2008;22:94-97.
47. Nichols L, Martindale-Adams J, Burns R, et al. Social marketing as a framework for recruitment: illustrations from the REACH study. J Aging Health. 2004;16(suppl 5): 157S-176S.
48. Hinton L, Carter K, Reed BR, et al. Recruitment of a community-based cohort for research on diversity and risk of dementia. Alzheimer Dis Assoc Disord. 2010;24:234-241.
49. Israel BA, Schulz AJ, Parker EA, et al. Review of communitybased research: assessing partnership approaches to improve public health. Annu Rev Public Health. 1998;19:173-202.
50. Shulz AJ, Israel BA, Lantz P. Instrument for evaluating dimensions of group dynamics within community-based participatory research partnerships. Eval Prog Plan. 2003; 26:249-262.
51. Oetting ER, Jumper-Thurman P, Plested B, et al. Community readiness and health services. Subst Use Misuse. 2001;36: 825-843.
52. Etkin CD, Farran CJ, Barnes LL, et al. Recruitment and enrollment of caregivers for a lifestyle physical activity clinical trial. Res Nurs Health. 2012;35:70-81.
53. O'Bryant SE, Johnson L, Balldin V, et al. Characterization of Mexican Americans with mild cognitive impairment and Alzheimer's disease. JAlzheimer Dis. 2013;33:373-379.
54. Morhardt D, Pereyra M, Iris M. Seeking a diagnosis for memory problems: the experiences of caregivers and families in 5 limited English proficiency communities. Alzheimer Dis Assoc Disord. 2010;24(suppl):S42-S48.
55. Dowling NM, Olson N, Mish T, et al. A model for the design and implementation of a participant recruitment registry for clinical studies of older adults. Clin Trials. 2012;9:204-214.
56. Harris PA, Scott KW, Lebo L, et al. ResearchMatch: a national registry to recruit volunteers for clinical research. Acad Med. 2012;87:66-73.
57. Reiman EM, Langbaum JB, Fleisher AS, et al. Alzheimer's prevention initiative: a plan to accelerate the evaluation of presymptomatic treatments. J Alzheimer Dis. 2011;26(suppl 3): 321-329.
58. Richesson RL, Lee HS, Cuthbertson D, et al. An automated communication system in a contact registry for persons with rare diseases: scalable tools for identifying and recruiting clinical research participants. Contemp Clin Trial. 2009;30:55-62.
59. Petersen RC, Nixon RA, ThiesW, et al. Alzheimer's Association TrialMatch: a next generation resource for matching patients to clinical trials in Alzheimer's disease and related disorders. Neurodegenerative Dis Manag. 2012;2:105-113.
60. Grill JD, Karlawish J, Elashoff D, et al. Risk disclosure and preclinical Alzheimer's disease clinical trial enrollment. Alzheimer Dement. 2013;9:356 e1-359 e1.
61. Galvin JE, Roe CM, Powlishta KK, et al. The AD8: a brief informant interview to detect dementia. Neurology. 2005;65:559-564.
62. Young SD, Cumberland WG, Lee SJ, et al. Social networking technologies as an emerging tool for HIV prevention: a cluster randomized trial. Ann Intern Med. 2013;159:318-324.
63. Embi PJ, Jain A, Clark J, et al. Effect of a clinical trial alert system on physician participation in trial recruitment. Arch Intern Med. 2005;165:2272-2277.
64. Deshmukh VG, Meystre SM, Mitchell JA. Evaluating the informatics for integrating biology and the bedside system for clinical research. BMC Med Res Methodol. 2009;9:70.
65. Janevic MR, Connell CM. Racial, ethnic, and cultural differences in the dementia caregiving experience: recent findings. Gerontologist. 2001;41:334-347.
66. Connell CM, Gibson GD. Racial, ethnic, and cultural differences in dementia caregiving: review and analysis. Gerontologist. 1997;37:355-364.