Title |
Postal recruitment and consent obtainment from index cases of narcolepsy
|
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Published in |
BMC Medical Ethics, January 2016
|
DOI | 10.1186/s12910-016-0089-1 |
Pubmed ID | |
Authors |
Gambo Aliyu, Salah M. Mahmud |
Abstract |
Access to research volunteers may be hampered by low numbers of cases and few eligible participants for rare diseases in clinical settings. 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. 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. In this setting, postal recruitment for biomedical research on rare conditions is feasible and time and cost effective. |
X Demographics
Geographical breakdown
Country | Count | As % |
---|---|---|
Spain | 1 | 100% |
Demographic breakdown
Type | Count | As % |
---|---|---|
Members of the public | 1 | 100% |
Mendeley readers
Geographical breakdown
Country | Count | As % |
---|---|---|
Unknown | 17 | 100% |
Demographic breakdown
Readers by professional status | Count | As % |
---|---|---|
Student > Master | 3 | 18% |
Researcher | 2 | 12% |
Student > Postgraduate | 2 | 12% |
Student > Bachelor | 1 | 6% |
Professor | 1 | 6% |
Other | 4 | 24% |
Unknown | 4 | 24% |
Readers by discipline | Count | As % |
---|---|---|
Medicine and Dentistry | 4 | 24% |
Nursing and Health Professions | 2 | 12% |
Social Sciences | 2 | 12% |
Business, Management and Accounting | 1 | 6% |
Sports and Recreations | 1 | 6% |
Other | 0 | 0% |
Unknown | 7 | 41% |