Operational study on early detection and treatment of sickle cell disease

— Senegal —

BACKGROUND

Each year in Africa, 1% of newborns carry the sickle cell trait, meaning 350,000 children. Without swift and appropriate care, half of them may die from complications generated by the disease. Since 2006, the WHO has recommended neonatal screening and early treatment of sickle cell disease to effectively combat this affliction.

In 2013, due to the severity of these needs, the University Gaston Berger in Saint-Louis, Senegal, decided to launch a broad operational study under the leadership of Professor Ibrahima Diagne. The objectives were to measure the benefits of systematic neonatal screening and early treatment, assess and approve ad hoc protocols, and develop a model that could be used across the country and beyond. The University chose to call upon the Malian experience of Fondation Pierre Fabre to accomplish these goals. The Foundation, excited about the project’s scope, agreed to a six-year partnership.

Both institutions therefore opened a testing and analysis laboratory at the University: every year, 6,000 newborns in the maternity ward at the Saint-Louis Regional Hospital and a medical centre on the city’s outskirts are screened. An outpatient support unit to help sick children is also being created. Meanwhile, the local medical and paramedical staff are trained in diagnosis and management of the disease and the broader population, more specifically pregnant women, are being educated on the need for neonatal screening. Once the study is completed, children will continue to be monitored until the age of fifteen.

For Fondation Pierre Fabre, this operational study is important in more ways than one. First, it accomplishes a twofold mission by combining healthcare with research. Second, it serves as the basis for an innovative model in line with Senegal’s needs and means. Lastly, it promotes an approach belonging to African scientists, which is a powerful argument in light of the fact that 80% of sickle cell disease research is performed in the North, while 80% of those afflicted with the disease are in the South.

KEY FACTS
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Priority
Combating Sickle cell disease

Programme

Since 2013

Type of involvement
Distributor and operator

Actions

  • Global logistics support
  • Funding and project management for construction of the testing laboratory and the outpatient support unit
  • Equipment funding
  • Staff training
  • Guidance on information and awareness campaigns
  • Networking with other sickle cell disease programmes

Université Gaston Berger
Route de Ngallèle
BP 234
SAINT-LOUIS
SENEGAL
www.ugb.sn/

While the United States, Brazil, Europe and other countries, such as India, have developed their own models in the global fight against sickle cell disease, this is not the case in Africa. So we must find a way to offer a systematic neonatal screening that can be applied on a nationwide scale.”

Pr Ibrahima Diagne
Paediatrician, Coordinator for the Ministry of Health and Social Action for the fight against sickle cell disease, Director of the Training and Research Unit for Medicine at the University Gaston Berger of Saint-Louis du Sénégal

ACHIEVEMENTS AND FUTURE INITIATIVES

Achievements

1
medical analysis laboratory dedicated to neonatal screening built at the University in 2014

6,000
tests per year can be performed in this laboratory

1
outpatient support unit for children with the disease built in 2014

Future initiatives

In 2015, the testing and analysis laboratory and the outpatient unit should be completed. Meanwhile, the Foundation and the University are focusing on forming protocols, training healthcare workers and midwives, and raising awareness among mothers-to-be, to officially launch the study at year end.

PARTENAIRES

  • Centre de santé de référence de Saint Louis

See also

See also

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