A model for the design and implementation of a participant recruitment registry for clinical studies of older adults

Clinical Trials

Volumn 9, Issue 2, 2012, Pages 204-214

  Dowling, N Maritza ^a   Olson, Nevin ^a,b   Mish, Thomas ^b   Kaprakattu, Preethy ^a,b   Gleason, Carey ^a  

^a UNIVERSITY OF WISCONSIN SCHOOL OF MEDICINE AND PUBLIC HEALTH   (United States)

^b UNIVERSITY OF WISCONSIN MADISON   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ALZHEIMER DISEASE; ARTICLE; CLINICAL RESEARCH; CLINICAL STUDY; CONCEPTUAL FRAMEWORK; DATA BASE; DISEASE COURSE; EARLY DIAGNOSIS; HUMAN; PARTICIPANT RECRUITMENT REGISTRY; PRIORITY JOURNAL; PROBLEM SOLVING; PROCESS DEVELOPMENT; REGISTRATION; STUDY DESIGN; THEORETICAL MODEL; UNITED STATES;

AGED; CLINICAL TRIALS AS TOPIC; COGNITION DISORDERS; HUMANS; MODELS, ORGANIZATIONAL; PATIENT SELECTION; REGISTRIES; WISCONSIN;

EID: 84861792600     PISSN: 17407745     EISSN: 17407753     Source Type: Journal    
DOI: 10.1177/1740774511432555     Document Type: Article

References (25)

1. Guadagnolo BA, Petereit DG, Helbig P, et al. Involving American Indians and medically underserved rural populations in cancer clinical trials. Clin Trials. 2009 ; 6: 610-17
2. Hawranik P, Pangman V. Recruitment of community-dwelling older adults for nursing research: A challenging process. Can J Nurs Res. 2002 ; 33: 171-84
3. Hutchins LF, Unger JM, Crowley JJ, Coltman CA, Albain KS. Underrepresentation of patients 65 years of age or older in cancer-treatment trials. New Engl J Med. 1999 ; 341: 2061-67
4. McDonald AM, Knight RC, Campbell MK, et al. What influences recruitment to randomized controlled trials? A review of trials funded by two UK funding agencies. Trials. 2006 ; 7: 1-8
5. Ross S, Grant A, Counsell C, et al. Barriers to participation in randomized controlled trials: A systematic review. J Clin Epidemiol. 1999 ; 52: 1143-56
6. Boles M, Getchell WS, Feldman G, McBride R, Hart RG. Primary prevention studies and the healthy elderly: Evaluating barriers to recruitment. J Community Health. 2000 ; 25: 279-92
7. Jackson J, Mandel D, Blanchard J, et al. Confronting challenges in intervention research with ethnically diverse older adults: The USC Well Elderly II Trial. Clin Trials. 2009 ; 6: 90-101
8. Lai GY, Gary TL, Tilburt J, et al. Effectiveness of strategies to recruit underrepresented populations into cancer clinical trials. Clin Trials. 2006 ; 3 (2). 133-41
9. Ridda I, MacIntyre CR, Lindley RI, Tan TC. Difficulties in recruiting older people in clinical trials: An examination of barriers and solutions. Vaccine. 2010 ; 28: 901-6
10. Rochon PA, Berger P, Gordon M. The evolution of clinical trials: Inclusion and representation. Can Med Assoc J. 1998 ; 159: 1373-74
11. Wujcik D, Wolff SN. Recruitment of African Americans to national oncology clinical trials through a clinical trial shared resource. J Health Care Poor Underserved. 2010 ; 21: 38-50
12. Ballard E, Nash F, Raiford K, Harrell L. Recruitment of Black elderly for clinical research studies of dementia: The CERAD experience. Gerontologist. 1993 ; 33: 561-65
13. Ejiogu N, Norbeck JH, Mason MA, et al. Recruitment and retention strategies for minority or poor clinical research participants: Lessons from the healthy aging in neighborhoods of diversity across the life span study. Gerontologist. 2011 ; 51: 33-45
14. Tarlow BA, Mahoney DF. The cost of recruiting Alzheimer's disease caregivers for research. J Aging Health. 2000 ; 12: 490-510
15. National Institutes of Health-NIH News. NIH Announces First National Research Study Recruitment Registry [press release, 10November2009]. Available at http://www.nih.gov/news/health/nov2009/ncrr-10.htm (accessed November 2010).
16. Ganguli M, Lytle ME, Reynolds MD, Dodge HH. Random versus volunteer selection for a community-based study. J Gerontol A Biol Sci Med Sci. 1998 ; 53: M39 - M46
17. Treves TA, Verchovsky R, Klimovitsky S, Korczyn A. Recruitment rate to drug trials for dementia of the Alzheimer's type. Alzheimer Dis Assoc Disord. 2000 ; 14: 209-11
18. Connell CM, Shaw BA, Holmes SB, Foster NL. Caregivers' attitudes toward their family members' participation in Alzheimer disease research: Implications for recruitment and retention. Alzheimer Dis Assoc Disord. 2001 ; 15: 137-45
19. Shatenstein B, Kergoat M-J, Reid I. Issues in recruitment, retention and data collection in a longitudinal nutrition study of community dwelling older adults with early-stage Alzheimer dementia. J Appl Gerontol. 2008 ; 27: 267-85
20. Dugas M, Lange M, Berdel WE, Müller-Tidow C. Workflow to improve patient recruitment for clinical trials within hospital information systems: A case-study. Trials. 2008 ; 9: 2-7
21. Alzheimer's Association - Research Center. About Alzheimer's Association TrialMatch. http://www.alz.org/research/clinical-trials/find-clinical-trials- trialmatch.asp (accessed November, 2010).
22. Parker G Structured Problem Solving. Brookfield, VT: Gower ; 1995 :
23. Ramo S, St Clair RK The Systems Approach: Fresh Solutions to Complex Problems Through Combining Science and Practical Common Sense. Anaheim, CA: KNI, Inc ; 1998 :
24. Cherns A. The principles of socio-technical design revisited. Hum Relat. 1987 ; 40: 153-61
25. Fellows LK, Stark M, Berg A, Chatterjee A. Patient registries in cognitive neuroscience research: Advantages, challenges, and practical advice. J Cognit Neurosci. 2008 ; 20: 1107-13