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The 2nd Specific Aim SPARCo Research Plan was to develop, implement and evaluate a resource-based, multi-level, “Guidelines for Management of SCD in SSA”, in order to standardize the care of individuals with SCD.
The Main Objectives of Specific Aim 2 were to
• Review existing standard of care guidelines (Yr. 1-2);
• Develop and compile locally feasible and consistent SCD standards of care (Yr. 1-2);
• Introduce standards of care in SPARCo sites (Yr. 3);
• Evaluate standards of care (Yr. 4); and,
• Scale-up standards of care to regional countries (Yr. 4)

The term “Guidelines” was changed to Standards of Care in order to make the recommendation less legally binding or prescriptive. A Standards of Care Working Group (SoC-WG), representing all the three SPARCo Sites was set up by Jan 2018.
Methods: Initial task of the SoC-WG was to collect and review all existing and pertinent the SCD management guidelines and protocols available at Consortium sites and internationally, concentrating on those available in English. WG members were assigned guidelines first to list the topics covered so that we could all agree on a composite set of topics to cover in the Standard (highest level) SPARCo SoC. Members were assigned topics to develop recommendations. Following internal review by members of the WG, the recommendations were submitted to the SPARCo Sites for review, editing, and comments.

The SoC members then worked on setting the categories of resource-based levels of healthcare institutions for which the Standard version would be translated. These lower levels of SoC are currently in development.
Accomplishments: To track, monitor and produce its work, the WG developed a shared spreadsheet Workbook to set goals, track assignments, monitor progress, and summarize work performed. The Standard version of the SoC has been completed and reviewed by the clinical teams of the SPARCo Sites. Work is in progress on developing the 5 scaled-down versions of the SPARCo Standards of Care.