Title |
The feasibility of collecting information from people with Multiple Sclerosis for the UK MS Register via a web portal: characterising a cohort of people with MS
|
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Published in |
BMC Medical Informatics and Decision Making, July 2012
|
DOI | 10.1186/1472-6947-12-73 |
Pubmed ID | |
Authors |
David V Ford, Kerina H Jones, Rod M Middleton, Hazel Lockhart-Jones, Inocencio DC Maramba, Gareth J Noble, Lisa A Osborne, Ronan A Lyons |
Abstract |
A UK Register of people with Multiple Sclerosis has been developed to address the need for an increased knowledge-base about MS. The Register is being populated via: a web-based portal; NHS neurology clinical systems; and administrative data sources. The data are de-identified and linked at the individual level. At the outset, it was not known whether people with MS would wish to participate in the UK MS Register by personally contributing their data to the Register via a web-based system. Therefore, the research aim of this work was to build an internet-mounted recruitment and consenting technology for people with Multiple Sclerosis, and to assess its feasibility as a questionnaire delivery platform to contribute data to the UK MS Register, by determining whether the information provided could be used to describe a cohort of people with MS. |
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Geographical breakdown
Country | Count | As % |
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India | 1 | 33% |
Canada | 1 | 33% |
United States | 1 | 33% |
Demographic breakdown
Type | Count | As % |
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Practitioners (doctors, other healthcare professionals) | 2 | 67% |
Members of the public | 1 | 33% |
Mendeley readers
Geographical breakdown
Country | Count | As % |
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Italy | 1 | 1% |
Unknown | 92 | 99% |
Demographic breakdown
Readers by professional status | Count | As % |
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Student > Master | 15 | 16% |
Researcher | 14 | 15% |
Student > Ph. D. Student | 11 | 12% |
Student > Doctoral Student | 7 | 8% |
Student > Bachelor | 6 | 6% |
Other | 20 | 22% |
Unknown | 20 | 22% |
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Medicine and Dentistry | 34 | 37% |
Agricultural and Biological Sciences | 5 | 5% |
Nursing and Health Professions | 5 | 5% |
Psychology | 4 | 4% |
Computer Science | 3 | 3% |
Other | 16 | 17% |
Unknown | 26 | 28% |