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Sickle cell disease: Translating clinical care to low-resource countries through international research
Luke R Smart1, Arielle G Hernandez2, Russell E Ware3
1Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, OH; Department of Medicine, University of Cincinnati, Cincinnati, OH; Global Health Center, Cincinnati Children's Hospital Medical Center, Cincinnati, OH.
Insights
Sickle cell disease (SCD) management is limited in low-resource settings, causing high mortality. Collaborative research programs focused on training and local data collection can improve care and create national guidelines for SCD.
Area of Science:
- Global Health
- Hematology
- Clinical Research
Background:
- Sickle cell disease (SCD) disproportionately affects populations in low-resource settings, leading to significant morbidity and mortality.
- Essential SCD management strategies like newborn screening, vaccinations, and hydroxyurea treatment are often inaccessible in these regions.
- Existing North-South partnerships aim to enhance clinical care for SCD.
Purpose of the Study:
- To outline a strategy for developing prospective research programs in low-resource settings for SCD.
- To emphasize the importance of training, capacity building, and local data collection in these programs.
- To guide the creation of national SCD guidelines and improve clinical care.
Main Methods:
- Developing prospective research programs aligned with World Health Organization directives.
- Focusing on comprehensive training, capacity building, and local data collection.
- Adhering to guiding principles including full partnerships, thorough planning, and financial considerations.
Main Results:
- The proposed strategy facilitates the establishment of sustainable collaborative research programs.
- These programs are designed to address the lack of essential SCD management tools in low-resource settings.
- Successful implementation is expected to lead to the development of national guidelines and improved patient outcomes.
Conclusions:
- Collaborative research programs are crucial for advancing SCD care in resource-limited areas.
- A structured approach focusing on local capacity building and data is essential for long-term sustainability.
- The ultimate goal is to improve clinical care and reduce mortality for individuals with SCD globally.
Abstract:
The vast majority of the world's population of children and adults with sickle cell disease (SCD) are born in low-resource settings, particularly in sub-Saharan Africa, the Caribbean, the Middle East, and India. As a result numerous well-established, cost-effective, and evidence-based strategies for managing SCD such as newborn screening, early education, vaccinations, screening for stroke prevention, and treatments with safe transfusions and hydroxyurea are often unavailable, leading to substantial morbidity and increased mortality. Collaborations between high-income countries and these low-resource settings (North-South partnerships) have been advocated, with the goal of improving clinical care. Based on directives promulgated by the World Health Organization, we have developed a strategy of developing prospective research programs that focus on training, capacity building, and local data collection. This strategy involves consideration of important guiding principles, full partnerships, proper planning, and financial issues before program launch, after which rigorous program management is required for full effect and long-term sustainability. Ultimately these collaborative research programs should help create national guidelines and lead to improved clinical care for all children and adults with SCD.
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