The Sickle Cell Foundation of Ghana (SCFG), in collaboration with Novartis has developed a mobile digital application (App) to help manage the data collected on newborns in the National Newborn Screening Programme for Sickle Cell Disease (NNSP-SCD).
This initiative forms part of the mission of the SCFG and its responsibility to help save the lives of young children with sickle cell disease.
The Ghana Newborn Screening App (Ghana NBS App), the first of its kind globally, was designed by Dimagi (USA) on its CommCare platform based on the Ghana NBS Database designed by Prof. Kwaku Ohene-Frempong, the President of SCFG, and used in the NNSP-SCD.
The App which is currently used by seven existing screening centres in the country will facilitate quality data collection in the NNSP-SCD to enable faster tracking and referral of newborns with sickle cell disease for treatment.
The App is made accessible to staff at the screening centres and those at the National Newborn Screening Laboratory at Noguchi Memorial Institute for Medical Research.
So far, over 17, 000 babies have been screened through the app since its implementation in 2018.
Professor Kwaku Ohene-Frempong, who is also the Programme Director of the NNSP-SCD, explaining the importance of this initiative stated, “newborn screening for sickle cell disease is key to the treatment of the disease. It helps to initiate preventive treatment early to save lives, and we know the introduction of this application has simplified and accelerated the process that enables us to save more lives”.
According to him “the National Newborn Screening Programme Sickle Cell Disease was launched in 2010 by the Ministry of Health with the inauguration of a Technical Advisory Committee (TAC) that was charged with the responsibility of drafting a Newborn Screening Policy for Ghana, and a detailed plan for the implementation of the programme”.
He also revealed that the Ministry of Health and SCFG signed a Memorandum of Understanding (MoU) in 2011 under which SCFG was appointed as the National Coordinating Agency for the National Newborn Screening Programme for Sickle Cell Disease.
Mr Roland Addo-Hammond, Head of Access, Sickle Cell Disease Programme, Global-Health and Corporate Responsibility at Novartis, said “Novartis remains committed to improving the lives of persons living with sickle cell disease.”
“Our support to Ghana in the treatment and management of sickle cell disease goes beyond just providing Hydroxyurea, but also to make sure we help to identify and trace babies born with the disease in order to provide early care for their survival and wellbeing. And this can only be done through effective tools like the Ghana NBS App to help in data collection and management,” he said.