Related Experiment Video
Updated: Oct 19, 2025
A Precision Medicine Tool for Measurement and Monitoring of Hemoglobin S in Sickle Cell Disease Patients Receiving Transfusion Therapy
Capacity Building for Primary Stroke Prevention Teams in Children Living With Sickle Cell Anemia in Africa
Djamila L Ghafuri1, Brittany Covert Greene2, Bilya Musa3
1Vanderbilt-Meharry Sickle Cell Center for Excellence, Department of Pediatrics, Vanderbilt University School of Medicine, Nashville, Tennessee; Division of Pediatric Neurology, Department of Pediatrics, Vanderbilt University of Medicine, Nashville, Tennessee.
Insights
Nigeria leads the world in childhood sickle cell anemia (SCA). Capacity building and clinical trials in Nigeria established a sustainable strategy for pediatric stroke prevention in SCA patients.
Area of Science:
- Neurology
- Hematology
- Public Health
Background:
- Nigeria has the highest global burden of sickle cell anemia (SCA), with 150,000 infants born annually.
- Primary stroke prevention is critical for children with SCA in Nigeria, a region facing significant challenges.
Purpose of the Study:
- To describe capacity-building strategies for conducting primary stroke prevention trials in Nigeria.
- To implement and assess a sustainable strategy for pediatric SCA stroke prevention.
Main Methods:
- Two NIH-funded trials (feasibility and Phase III RCT) involving 679 children with SCA.
- Capacity building included research governance training for 23 personnel, TCD certification, and e-prescription implementation.
- Collaboration with regional officials for TCD screening and hydroxyurea funding.
Main Results:
- Extensive training and certification of research personnel and radiologists in TCD.
- Successful implementation of an e-prescription system for hydroxyurea tracking.
- Secured regional government support for ongoing screening and treatment.
Conclusions:
- The trials and capacity-building efforts provide a sustainable model for pediatric SCA stroke prevention in Africa.
- Demonstrated feasibility of conducting clinical research in a low-resource setting.
Background:
Nigeria has the highest proportion of children with sickle cell anemia (SCA) globally; an estimated 150,000 infants with SCA are born annually. Primary stroke prevention in children with SCA must include Nigeria. We describe capacity-building strategies in conjunction with two National Institutes of Health-funded primary stroke prevention trials (a feasibility trial and phase III randomized controlled trial) with initial hydroxyurea treatment for children with SCA and abnormal transcranial Doppler (TCD) velocities in Nigeria. We anticipated challenges to conducting clinical trials in a low-resource setting with a local team that had not previously been involved in clinical research and sought a sustainable strategy for primary stroke prevention.
Methods:
This is a descriptive, prospective study of challenges, solutions, and research teams in two trials that enrolled a total of 679 children with SCA.
Results:
As part of the capacity-building component of the trials, over eight years, 23 research personnel (physicians, nurses, research coordinators, a statistician, and a pharmacist) completed a one-month research governance and ethics training program at Vanderbilt University Medical Center, USA. A lead research coordinator for each site completed the Society of Clinical Research Professionals certification. TCD machines were donated; radiologists and nonradiologists were trained and certified to perform TCD. A scalable E-prescription was implemented to track hydroxyurea treatment. We worked with regional government officials to support ongoing TCD-based screening and funding for hydroxyurea for children with SCA at a high risk of stroke.
Conclusions:
Our trials and capacity building demonstrate a sustainable strategy to initiate and maintain pediatric SCA primary stroke prevention programs in Africa.
More Related Videos
09:52Setting Up a Stroke Team Algorithm and Conducting Simulation-based Training in the Emergency Department - A Practical Guide
Published on: January 15, 2017
05:23Continuous Manual Exchange Transfusion for Patients with Sickle Cell Disease: An Efficient Method to Avoid Iron Overload
Published on: March 14, 2017