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CARDIOVASCULAR JOURNAL OF AFRICA • Volume 26, No 6, November/December 2015
228
AFRICA
multi-national REMEDY study
13
demonstrate the important
roles that register data can play in research and in the design
of effective RHD control programmes. A register variant
can also be used to organise and store data in large-scale
screening programmes to identify individuals with RHD who
were previously undiagnosed. Until now, however, virtually all
patient registers used in RHD programmes have relied on paper-
based data collection and non-networked data-management
systems, which limit their utility.
The emergence of mobile and cloud technologies, together
with the increasing availability of low-cost mobile phones,
computer tablets and data storage, offer the opportunity to
explore the use of electronic patient registers in RHD control
programmes in high-priority countries. We have developed
such an electronic register tailored for specific use in a large-
scale comprehensive public–private effort to combat RHD in
Zambia. This tool was demonstrated in February 2014, at the
2nd All Africa Workshop on Rheumatic Fever and Rheumatic
Heart Disease in Livingstone, Zambia,
14,15
and the delegates
(representing 13 African countries) appealed for a version
of the tool that could be incorporated into their own RHD
programmes.
15
To address this need, we sought to adopt the WHF’s
framework for RHD patient register databases for an open-
access, mobile, compatible electronic platform (‘eRegister’) that
would be user-friendly, modifiable to local contexts, inexpensive
to operate, and straightforward to distribute. We then sought to
assess the practical benefits of deploying such a system, and to
make the eRegister freely available to potential users.
Methods
World Heart Federation’s RHD patient database
tools
The WHF has developed patient register database tools in
support of RHD control programmes.
16
Core components are
downloadable from the WHF website and include (1) a data-
collection form (Figs 1, 2) meant to be printed and used by
health workers to record a patient’s medical history, management
plan and clinical outcomes; and (2) a complementary electronic
Microsoft Access
®
database template that contains the same
fields as the data-collection form. Using these tools, data would
normally be entered by hand onto a printed data-collection form
and then copied into the electronic database, which has inbuilt
functionality to provide a rich variety of data reports, but in
most cases would be non-networked and therefore accessible
only from a single computer terminal.
Fig. 1.
Data-collection form for the WHF patient register database, page 1.