The journal of nutrition, health & aging

, Volume 14, Issue 7, pp 563–568 | Cite as

Physicians and caregivers: Ready and waiting for increased participation in clinical research

  • Roy W. JonesEmail author
  • S. Andrieu
  • S. Knox
  • J. Mackell
JNHA: Clinical Neurosciences


Progressive development of pharmacotherapy for Alzheimer’s disease (AD) as well as nonpharmacological treatments is critically dependent on the timely recruitment of appropriate subjects for clinical trials. Accordingly, the IMPACT survey sought to determine the level of awareness of clinical trials and the willingness to foster patient involvement/participation in research studies. IMPACT survey participants were recruited via the Internet in equal numbers from 5 European countries—France, Germany, Italy, Spain and the United Kingdom. During April and May 2009, 250 caregivers and 500 physicians who agreed to participate in this market-based survey completed a 30-minute Web-based questionnaire that included items concerning awareness of clinical research and willingness to facilitate participation of AD patients in such research. Awareness of local clinical trials amongst both caregivers (24% overall; range by country, 14% to 34%) and physicians (19% overall; range by country, 13% to 30%) was found to be low in all countries surveyed. In contrast, the willingness of physicians to refer patients to, and caregivers to support their participation in, clinical trials was extremely high (98% and 81%, respectively). These results strongly indicate that physicians and caregivers are ready and waiting to become more involved in clinical research. Initiatives to increase awareness of clinical trials amongst caregivers and physicians and to conduct clinical trials within the geographical area of as many potential participants as possible should result in much more effective patient recruitment to AD clinical trials.

Key words

Clinical trials recruitment Alzheimer’s disease caregivers clinical research participation physicians 


Unable to display preview. Download preview PDF.

Unable to display preview. Download preview PDF.


  1. 1.
    Mapstone J, Elbourne D, Roberts I. Strategies to improve recruitment into research studies. Cochrane Database Syst Rev. 2007;2:MR000013.PubMedGoogle Scholar
  2. 2.
    Sabbagh MN. Drug development for Alzheimer’s disease: where are we now and where are we headed? Am J Geriatr Pharmacother. 2009;7:167–185.CrossRefPubMedGoogle Scholar
  3. 3.
    Doody RS, Stevens JC, Beck C, et al. Practice parameter: management of dementia (an evidence-based review). Report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology. 2001;56(9):1154–1166.PubMedGoogle Scholar
  4. 4. Available at: (substitute country at country position for 4 other countries)
  5. 5.
    Jones RW, Mackell J, Berthet K, Knox S. Assessing attitudes and behaviours surrounding Alzheimer’s disease in Europe: key findings of the Important Perspectives on Alzheimer’s Care and Treatment (IMPACT) survey. J Nutr Health Aging. 2010;14(7):525–530.CrossRefPubMedGoogle Scholar
  6. 6.
    Kenigsberg PA. Western Europe: economic environment of Alzheimer’s disease in France. In: Dementia in Europe Yearbook 2008. Available at: Accessed 18 January 2010.
  7. 7.
    Department of Health Web site. National Dementia Strategy. Available at: Accessed 18 January 2010.
  8. 8.
    Karlawish J, Carey M, Rubright J, TenHave T. How redesigning AD clinical trials might increase study partners’ willingness to participate. Neurology 2008;71:1883–1888CrossRefPubMedGoogle Scholar
  9. 9.
    Mastwyk M, Ritchie CW, LoGiudice D, Sullivan KA, Macfarlane S. Carer impressions of participation in Alzheimer’s disease clinical trials: what are their hopes? And is it worth it? Int Psychogeriatr. 2002;14(1):39–45.CrossRefPubMedGoogle Scholar
  10. 10.
    Robinson L, Vellas B, Knox S, Lins K. Clinical practice patterns of generalists and specialists in Alzheimer’s disease: what are the differences, and what difference do they make? J Nutr Health Aging. 2010;14(7):545–552CrossRefPubMedGoogle Scholar
  11. 11.
    Wortmann M, Andrieu S, Mackell J, Knox S. Evolving attitudes to Alzheimer’s disease among the general public and caregivers in Europe: findings from the IMPACT survey. J Nutr Health Aging. 2010;14(7):531–536CrossRefPubMedGoogle Scholar
  12. 12.
    Galvin JE, Meuser TM, Boise L, Connell CM. Predictors of physician referral for patient recruitment to Alzheimer disease clinical trials. Alzheimer Dis Assoc Disord. 2009;23(4):352–356.CrossRefPubMedGoogle Scholar
  13. 13.
    Treves TA, Verchovsky R, Klimovitsky S, Korczyn AD. Recruitment rate to drug trials for dementia of the Alzheimer type. Alzheimer Dis Assoc Disord. 2000;14(4):209–211.CrossRefPubMedGoogle Scholar
  14. 14.
    NIHR Dementias & Neurodegenerative Diseases Research Network (DeNDRoN) Web site. Available at: Accessed 18 January 2010.
  15. 15.
    Pfizer and private access announce plans to develop online community to accelerate clinical research. Medical News Today Web site. Available at: Accessed January 14, 2010.
  16. 16.
    Williams B, Irvine L, McGinnis AR, McMurdo ME, Crombie IK. When “no” might not quite mean “no”; the importance of informed and meaningful non-consent: results from a survey of individuals refusing participation in a health-related research project. BMC Health Serv Res. 2007;7:59.CrossRefPubMedGoogle Scholar
  17. 17.
    Griffith P, Lichtenberg P, Goldman R, Payne-Parrish J. Safety and efficacy of donepezil in African Americans with mild-to-moderate Alzheimer’s disease. J Natl Med Assoc. 2006;98(10):1590–1597.PubMedGoogle Scholar
  18. 18.
    Lopez O, Mackell JA, Sun Y, et al. Effectiveness and safety of donepezil in Hispanic patients with Alzheimer’s disease: a 12-week open-label study. J Natl Med Assoc. 2008;100(11):1350–1358.PubMedGoogle Scholar
  19. 19.
    Gallagher-Thompson D, Singer LS, Depp C, Mausbach BT, Cardenas V, Coon DW. Effective recruitment strategies for Latino and Caucasian dementia family caregivers in intervention research. Am J Geriatr Psychiatry. 2004;12(5):484–490.PubMedGoogle Scholar
  20. 20.
    Gallagher-Thompson D, Rabinowitz Y, Tang PC, et al. Recruiting Chinese Americans for dementia caregiver intervention research: suggestions for success. Am J Geriatr Psychiatry. 2006;14(8):676–683.CrossRefGoogle Scholar
  21. 21.
    Cohen-Mansfield J. Recruitment rates in gerontological research: the situation for drug trials in dementia may be worse than previously reported. Alzheimer Dis Assoc Disord. 2002;16(4):279–282. Comment: 283–284.CrossRefGoogle Scholar
  22. 22.
    Fritsch T, Adams KB, Redd D, Sias T, Herrup K. Use of live theater to increase minority participation in Alzheimer disease research. Alzheimer Dis Assoc Disord. 2006;20(2):105–111.CrossRefPubMedGoogle Scholar
  23. 23.
    Stocking CB, Hougham GW, Danner DD, Patterson MB, Whitehouse PJ, Sachs GA. Empirical assessment of a research advance directive for persons with dementia and their proxies. J Am Geriatr Soc. 2007;55(10):1609–1612.CrossRefPubMedGoogle Scholar
  24. 24.
    Reynish E, Cortes F, Andrieu S, Cantet C, Olde Rikkert M, Melis R, Froelich L, Frisoni GB, Jönsson L, Visser PJ, Ousset PJ, Vellas B; ICTUS Study Group. Reynish E The ICTUS study: a prospective longitudinal observational study of 1,380 AD patients in Europe. Study design and baseline characteristics of the cohort. Neuroepidemiology 2007;29:29–38CrossRefPubMedGoogle Scholar

Copyright information

© Serdi and Springer Verlag France 2010

Authors and Affiliations

  • Roy W. Jones
    • 1
    • 5
    Email author
  • S. Andrieu
    • 2
  • S. Knox
    • 3
  • J. Mackell
    • 4
  1. 1.RICE (The Research Institute for the Care of Older People)Royal United HospitalBathUK
  2. 2.Department of Public Health, GerontopoleUMR Inserm U558ToulouseFrance
  3. 3.European Medical Advisor (Dementia & Gastrointestinal Disease)Eisai Europe Ltd, HatfieldHertfordshireUK
  4. 4.Alzheimer Disease Management Team, Pfizer IncNew YorkUSA
  5. 5.RICERoyal United HospitalBathUK

Personalised recommendations