The designation of the orphan disease status to SCD by regulatory agencies, such as US Food and Drug Administration, spurred interest in product development for therapeutic agents in the treatment of the disease.
To this end, there are pan-African networks of research groups involved in developing databases across different countries that will create large cohorts of people living with SCD to support the development of new interventions in the treatment of SCD.
Even though studies of new technologies such as gene editing and whether they can replace bone marrow transplant—the only known definitive cure for sickle cell disease—are in early stages, the technologies are also offering much needed probes for understanding SCD, thus informing identification of new drug targets.
To get well characterised Sickle cell disease cohorts we need comprehensive care centres linked through a functional programme that provides a holistic care for the persons living with SCD.
In a setting like Kenya with communities known to have high prevalence of Sickle cell disease, community screening as strategy that will ultimately lead to reduction of the SCD burden is of essence.
