Postal recruitment and consent obtainment from index cases of narcolepsy

作者：Aliyu Gambo^*; Mahmud Salah M

来源：BMC Medical Ethics, 2016, 17(1): 6.

DOI：10.1186/s12910-016-0089-1

• Postal informed consent
• Recruitment
• Response rate
• Cost

Background: Access to research volunteers may be hampered by low numbers of cases and few eligible participants for rare diseases in clinical settings.
Methods: We recruited volunteers and obtained informed consent by mail from narcolepsy cases in a case-control study, and here in we report feasibility, response rate, timeliness and cost. We invited index cases into the study by mail through their care-giving physicians then mailed study information and consent forms to cases that indicated interest in the study.
Results: Of the 33 index cases invited, 15 (45.0 %) expressed interest in the study, and of those, 14 (93.3 %) returned their signed informed consents by mail. The median number of days from invitation to consent return was 39, interquartile range = 45, and the cost per consent obtained from the recruited subjects was $ 23.61.
Conclusion: In this setting, postal recruitment for biomedical research on rare conditions is feasible and time and cost effective.

• 出版日期2016-1-16