Sickle Cell Disease Registries and Control Programme (SCDRCP) is a project which kickstarted its activities in 2019 after receiving the required ethical approvals from the relevant Institutional Review Boards (IRBs) namely Institutional Scientific and Ethical Review Committee – Moi University and Moi Teaching and Referral Hospital (ISERC-MU/MTRH) and the National Commission of Science, Technology and Innovation (NACOSTI).

The aim of the SCDRCP is to strengthen evidence- based management of Sickle Cell Disease in a control Programme by setting up SCD registries, Screening Services and strengthening the specialized clinics.

The Registries (Data) to be set up include:

• Organizations that deal with Sickle Cell Disease
• Sickle Cell Federation Membership
• Persons Living with SCD (PLWSCD)
• Haemoglobin Variants

The focus of the SCDRCP is to implement the interventional strategies categorized into primary, secondary and tertiary by the World Health Organization (WHO).  The tertiary interventional strategy entails managing the complications as the patients present with the signs and symptoms.  The secondary interventional strategy entails screening the newborns, identifying those with SCD, follow them up and provide prophylactic management. The primary interventional strategy entails preventing birth of sicklers by ensuring persons are aware of their carrier status, there is pre-conception genetic counselling and reproductive choices made.  In order to be effective, all these intervention strategies should be carried out concurrently in an organized manner and in a SCD Control Programme.    

SCDRCP team also carries out the following activities:

• SCD awareness and genetic counselling
• Strengthen existing health care services for SCD
• SCD clinics establishment
• National haemoglobin variant HBV registries establishment