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).

A statement issued in Accra and copied to the Ghana News Agency said, the initiative formed part of the SCFG mission and its responsibility to help save the lives of young children with the 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 Professor Kwaku Ohene-Frempong, the President of SCFG, and used in the NNSP-SCD.

The App which is currently used by seven existing screening centers in the country, would facilitate quality data collection in the NNSP-SCD to enable faster tracking and referral of newborns with sickle cell disease for treatment.

The screening centers include, the Komfo Anokye Teaching Hospital, Korle-Bu Teaching Hospital, Kumasi South Hospital, Manhyia District Hospital, Tafo Hospital, Maternal and Child Health Hospital, and Suntreso Government Hospital.

It said the App had been made accessible to staff at the screening centers 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," it said.

Prof. Kwaku Ohene-Frempong, the Programme Director of the NNSP-SCD, explained the importance of this initiative saying, "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.
Prof Ohene-Frempong emphasized the need for support to expand the newborn screening programme to save more lives.

"We need about 40 centers in the country to help in the screening programme. We are currently working on adding more centers to what we already have, but we will need government's support to reach the estimated 40 centers," he noted.

Mr. Roland Addo-Hammond, Head of Access, Sickle Cell Disease Programme, Global-Health and Corporate Responsibility at Novartis, contributing to the importance of the App remarked, "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".

The Sickle Cell Foundation of Ghana (SCFG) is a non-governmental organization with the mission to support the development of resources and services to improve the health and quality of life of people with sickle cell disease and related conditions.