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 centres are 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. 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 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 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 the National Coordinating Agency for the National Newborn Screening Programme for Sickle Cell Disease.
The MoU further stated: “The Ministry shall consider SCFG as one of its Agencies under the Public-Private Partnership Programme, which is defined as the process through which the ministry partners private institutions for the provision of services in the health sector,” he added.
Professor Ohene-Frempong emphasised the need for support to expand the newborn screening programme to save more lives.
“We need about 40 centres in the country to help in the screening programme. We are currently working on adding more centres to what we already have, but we will need government’s support to reach the estimated 40 centres,” he noted.
Mr. Roland Addo-Hammond, Head of Access, Sickle Cell Disease Programme, Global-Health and Corporate Responsibility at Novartis, contributing to the App’s importance 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 technical support coordinator for implementation of the newborn screening App at SCFG, Mr. Augustine Kwabena Asubonteng, explained how the App works.
“The App has been designed to make the process of screening, tracking and follow-up of babies easier and more efficient. Once the personal details of babies are submitted electronically by nurses at the screening sites, the laboratory instantly receives the information; and, after the sample arrives and gets tested, the results are entered in the App. The App is then synchronised for the screening sites to receive results instantly on their phones for the nurses to start tracking babies with Presumptive Sickle Cell Disease for referral to the sickle cell clinics. Moreover, the App has also been automated to generate and email weekly and monthly reports on the performance of the screening sites.”
Madam Hanna Owusu, a Facility Focal Person at the Tafo Government Hospital in the Ashanti Region, commented on the App’s effectiveness.
“It has improved our service delivery at the centres. It makes it easier for us to trace families of babies who are diagnosed with sickle cell disease, and this helps in starting timely treatment for the babies as well as health education and support for the families. I can say we have been able to save more lives using the App,” she added.
The Sickle Cell Foundation of Ghana (SCFG) is a non-governmental organisation with a 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. The organisation serves as an Agency of the Ministry of Health (MOH), and as Programme Managers of the National Newborn Screening Programme for SCD. In addition, the SCFG, together with the Ministry of Health and the Ghana Health Service is a member of the Ghana-Novartis Public-Private Partnership in Sickle Cell Disease.
