App to track babies diagnosed with sickle cell disease
The app will document and share the diagnosis of babies with sickle cell disease.
What you need to know:
- The app will be used to collect and store data including screening results and medical histories for people diagnosed with SCD
- The app allows offline data collection when internet connections are down, and then syncs the data once the connection is restored.
A new app that will be used to document and share the diagnosis of babies with sickle cell disease (SCD) is being rolled out in the country.
This comes after Novartis, a global healthcare company based in Switzerland that provides healthcare solutions worldwide, announced its partnership with the American Society of Hematology (ASH) to provide six additional African nations with the technology that is already being used in Ghana. The other beneficiaries are Kenya, Liberia, Nigeria, Uganda, Tanzania and Zambia.
The app allows offline data collection when internet connections are down, and then syncs the data once the connection is restored. In addition to screening, access to timely treatment is also critical. The app will be used to collect and store data including screening results and medical histories for people diagnosed with SCD. It has the benefit of tracking patients and migrating them to clinical enrolment for further care.
Hydroxyurea (HU), the current global standard of care for SCD, will be made available in more facilities participating in ASH’s Consortium on Newborn Screening in Africa (CONSA).
The partnership with CONSA will provide standard-of-care practices for screening and early intervention therapies at participating institutions in the seven countries.
CONSA screens 10,000 – 16,000 babies per year in each country and provides clinical follow-up for babies living with SCD. According to Dr Bernard Awuonda, consultant paediatrician and CONSA project lead in Kenya, more than 300,000 babies are born yearly in Sub-Saharan Africa with SCD.
“Despite this, no country in our region has adopted a universal newborn screening programme,” he said.
According to Racey Muchilwa, Country President and the Head of Novartis sub-Saharan Africa, this partnership is a testament to the company’s long-standing commitment to provide a comprehensive approach to disease management that encompasses early intervention strategies such as screening and diagnosis, follow-up treatment such as Hydroxyurea, research to investigate new treatments and education and advocacy to improve access to existing therapies.
“As we learn together about the implementation of early diagnosis and treatment, we will be able to show national and international partners the value of this work in saving lives,” said ASH President Jane Winter.
The Novartis Africa Sickle Cell Disease programme is implemented through public-private partnerships with local governments as well as collaborations with universities, patient groups, professional societies and other organisations.
