Journal of Clinical Epidemiology
Volume 63, Issue 10 , Pages 1091-1100 , October 2010

Sampling and ethical issues in a multicenter study on health of people with intellectual disabilities

  • Marja Y. Veenstra

      Affiliations

    • Department of General Practice, CAPHRI Care and Public Health Research Institute, University of Maastricht
    • ,
  • Patricia N. Walsh

      Affiliations

    • UCD Centre for Disability Studies, School of Psychology, University College Dublin
    • ,
  • Henny M.J. van Schrojenstein Lantman-de Valk

      Affiliations

    • Department of General Practice, CAPHRI Care and Public Health Research Institute, University of Maastricht
    • Radboud University Nijmegen Medical Centre
    • Corresponding Author InformationCorresponding author. Radboud University Nijmegen Medical Centre, Department of Primary and Community Care (152 ELG), P.O. Box 9101, 6500 HB Nijmegen, The Netherlands. Tel.: +31 24 361 9236; fax: +31 24 354 1862.
    • ,
  • Meindert J. Haveman

      Affiliations

    • Fakultät Rehabilitationswissenschaften (Faculty of Rehabilitation Sciences), University of Dortmund
    • ,
  • Christine Linehan

      Affiliations

    • UCD Centre for Disability Studies, School of Psychology, University College Dublin
    • ,
  • Mike P. Kerr

      Affiliations

    • Welsh Centre for Learning Disabilities, Cardiff University
    • ,
  • Germain Weber

      Affiliations

    • Department of Clinical, Biological and Differential Psychology, Faculty of Psychology, University of Vienna
    • ,
  • Luis Salvador-Carulla

      Affiliations

    • Asociación Española para el Estudio Científico del Retraso Mental (AEECRM)
    • ,
  • Alexandra Carmen-Cara

      Affiliations

    • Sc Medfam Apolo Srl, Cǎlǎraşi
    • ,
  • Bernard Azema

      Affiliations

    • CREAI Languedoc Roussillon (Centre Régional pour l'Enfance et les Adultes Inadaptés), Montpellier
    • ,
  • Serafino Buono

      Affiliations

    • Unità Operativa di Psicologia, IRCCS OASI MARIA SS, Troina
    • ,
  • Arunas Germanavicius

      Affiliations

    • Research and Training Centre for Social Psychiatry at Psychiatric Clinic of Faculty of Vilnius University
    • ,
  • Jan Tossebro

      Affiliations

    • Department of Social Work and Health Science, Norwegian University of Science and Technology, Trondheim
    • ,
  • Tuomo Maatta

      Affiliations

    • Joint Municipal Authority for Kainuu, Health Care and Social Welfare/Service Centre of Kuusanmäki
    • ,
  • Geert van Hove

      Affiliations

    • Department of Orthopedagogics, Ghent University
    • ,
  • Dasa Moravec

      Affiliations

    • Inštitut za varovanje zdravja Republike Slovenije (Institute of Public Health of the Republic of Slovenia), Ljubljana

,Accepted 20 December 2009.

References 

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  2. Dennis BP. The origin and nature of informed consent: experiences among vulnerable groups. J Prof Nurs. 1999;15:281–287
  3. World Medical Association. Ethical principles for medical research involving human subjects. World Medical Association; 2008 Updated October 22, 2008; cited December 15, 2008. Available at http://www.wma.net/e/policy/b3.htm.
  4. European Commission, editor. Ethics, Research & Globalisation: Europeand its partners building capacity in research ethics. Brussels, Belgium. 2007.
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  12. van Hooren RH, Widdershoven GA, Candel MJ, van den Borne BW, Curfs LM. Between control and freedom in the care for persons with Prader-Willi syndrome: an analysis of preferred interventions by caregivers. Patient Educ Couns. 2006;63(1–2):223–231
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  14. Lennox N, Taylor M, Rey Conde T, Bain C, Purdie DM, Boyle F. Beating the barriers: recruitment of people with intellectual disability to participate in research. J Intellect Disabil Res. 2005;49(pt 4):296–305
  15. Evenhuis H, van Splunder J, Vink M, Weerdenburg C, van Zanten B, Stilma J. Obstacles in large-scale epidemiological assessment of sensory impairments in a Dutch population with intellectual disabilities. J Intellect Disabil Res. 2004;48(pt 8):708–718
  16. Dalton AJ, McVilly KR. Ethics guidelines for international, multicenter research involving people with intellectual disabilities. J Policy Pract Intellect Disabil. 2004;1(2):57–70
  17. Sackett DL. Bias in analytic research. J Chronic Dis. 1979;32:51–63
  18. van Schrojenstein Lantman-de Valk HM, Linehan C, Kerr M, Noonan Walsh P. Developing health indicators for people with intellectual disabilities. The method of the Pomona project. J Intellect Disabil Res. 2007;51:427–434
  19. Walsh PN, Kerr M, van Schrojenstein Lantman-de Valk HM. Health indicators for people with intellectual disabilities: a European perspective. Eur J Public Health. 2003;13(3 suppl):47–50
  20. In: World Health Organization  editors. Atlas: global health resources for persons with intellectual disabilities 2007. Geneva, Switzerland: WHO Press; 2007;
  21. European Commission. POMONA 2dhealth indicators for people with intellectual disabilities: using an indicator set. European Commission, DG Public Health; 2008 Updated 2008; cited December 15, 2008; Final Report. Available at: http://ec.europa.eu/health/ph_projects/2004/action1/action1_2004_14_en.htm.
  22. Emerson E. Poverty and people with intellectual disabilities. Ment Retard Dev Disabil Res Rev. 2007;13:107–113
  23. van der Vorm A, Olde Rikkert M, Vernooij-Dassen M, Dekkers W on behalf of the Edcon panel. Genetic research into Alzheimer's disease: a European focus group study on ethical issues. Int J Geriatr Psychiatry. 2008;23:11–15

 This study was funded by the European Commission DG Public Health Sanco grant agreement #2004130.

PII: S0895-4356(09)00386-2

doi: 10.1016/j.jclinepi.2009.12.001

Journal of Clinical Epidemiology
Volume 63, Issue 10 , Pages 1091-1100 , October 2010

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