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Several host organisations have begun to set up their own data desks, to convert and re-organise hard copy data into digital, downloadable formats that can inform and deepen their reporting and analysis.
Access to electronic database and hard copy data are restricted to authorized senior study personnel only.
These procedures reduce transcription errors for hard copy data to close to zero (<0.5%).
Password protection of soft data and use of key and lock for hard copy data was employed to guarantee confidentiality.
The hard copy data will be stored in a secured locker, which can only be accessed by the involved researchers.
Hard copy data will be stored securely in chronological order to support ease and reliability of any relevant follow-up actions.
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However, more than a third of participants reported sending hard-copy data by phone or fax.
Hard-copy data were transferred from all field sites to the data management teams at each university via next day mail service.
Almost half of respondents (N = 176, 48%) interact with the registry by internet connection, 133 (36%) submit hard-copy data by mail or fax, and 69 (19%) interact with the registry by modem; 35 (10%) of respondents reported more than one mode of interaction.
Exacerbating staff shortages, the cumbersome nature of the hard-copy data-collection tools added to time pressures that affected both clinical and administrative standards.
Of the five retrospective studies the two UK studies and the German study used databases built using data held by primary care doctors [ 17, 18, 24], and the remaining two retrospectively analysed digital and hard copy hospital data [ 15, 25].
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