Postal recruitment and consent obtainment from index cases of narcolepsy

详细信息    查看全文

• 作者：Gambo Aliyu ; Salah M. Mahmud
• 关键词：Postal informed consent ; Recruitment ; Response rate ; Cost
• 刊名：BMC Medical Ethics
• 出版年：2016
• 出版时间：December 2016
• 年：2016
• 卷：17
• 期：1
• 全文大小：616 KB
• 参考文献：1.Berg RM, Moller K, Rossel PJ. An ethical analysis of proxy and waiver of consent in critical care research. Acta Anaesthesiol Scand. 2013;57(4):408–16.CrossRef
  2.Vollmann J, Winau R. Informed consent in human experimentation before the Nuremberg code. Bmj. 1996;313(7070):1445–9.CrossRef
  3.O’Neill O. Some limits of informed consent. J Med Ethics. 2003;29(1):4–7.CrossRef
  4.Nijhawan LP, Janodia MD, Muddukrishna BS, Bhat KM, Bairy KL, Udupa N, et al. Informed consent: Issues and challenges. J Adv Pharm Technol Res. 2013;4(3):134–40.CrossRef
  5.Roache R. Why is informed consent important? J Med Ethics. 2014;40(7):435–6.CrossRef
  6.Gillon R. Medical ethics: four principles plus attention to scope. Bmj. 1994;309(6948):184–8.CrossRef
  7.Ursin LO. Personal autonomy and informed consent. Med Health Care Philos. 2009;12(1):17–24.CrossRef
  8.Flory J, Emanuel E. Interventions to improve research participants’ understanding in informed consent for research: a systematic review. Jama. 2004;292(13):1593–601.CrossRef
  9.Nishimura A, Carey J, Erwin PJ, Tilburt JC, Murad MH, McCormick JB. Improving understanding in the research informed consent process: a systematic review of 54 interventions tested in randomized control trials. BMC Med Ethics. 2013;14:28.CrossRef
  10.Afolabi MO, Bojang K, D’Alessandro U, Imoukhuede EB, Ravinetto RM, Larson HJ, et al. Multimedia Informed Consent Tool for a Low Literacy African Research Population: Development and Pilot-Testing. J Clin Res Bioeth. 2014;5(3):178.
  11.Kripalani S, Bengtzen R, Henderson LE, Jacobson TA. Clinical research in low-literacy populations: using teach-back to assess comprehension of informed consent and privacy information. Irb. 2008;30(2):13–9.
  12.Willison DJ, Keshavjee K, Nair K, Goldsmith C, Holbrook AM. Patients’ consent preferences for research uses of information in electronic medical records: interview and survey data. Bmj. 2003;326(7385):373.CrossRef
  13.Baker R, Shiels C, Stevenson K, Fraser R, Stone M. What proportion of patients refuse consent to data collection from their records for research purposes? Br J Gen Pract. 2000;50(457):655–6.
  14.Edwards P, Roberts I, Clarke M, DiGuiseppi C, Pratap S, Wentz R, et al. Increasing response rates to postal questionnaires: systematic review. Bmj. 2002;324(7347):1183.CrossRef
  15.Angus VC, Entwistle VA, Emslie MJ, Walker KA, Andrew JE. The requirement for prior consent to participate on survey response rates: a population-based survey in Grampian. BMC Health Serv Res. 2003;3(1):21.CrossRef
  16.Raziano DB, Jayadevappa R, Valenzula D, Weiner M, Lavizzo-Mourey R. E-mail versus conventional postal mail survey of geriatric chiefs. Gerontologist. 2001;41(6):799–804.CrossRef
  17.Stenhammar C, Bokstrom P, Edlund B, Sarkadi A. Using different approaches to conducting postal questionnaires affected response rates and cost-efficiency. J Clin Epidemiol. 2011;64(10):1137–43.CrossRef
  
• 作者单位：Gambo Aliyu (1)
  Salah M. Mahmud (1)
  
  1. Vaccine and Drug Evaluation Centre, Community Health Sciences, University of Manitoba, Winnipeg, MB, Canada
  
• 刊物主题：Ethics; Philosophy of Medicine; Theory of Medicine/Bioethics;
• 出版者：BioMed Central
• ISSN：1472-6939

文摘

Background Access to research volunteers may be hampered by low numbers of cases and few eligible participants for rare diseases in clinical settings.