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Nodding syndrome: bridging the gap-a scoping review protocol.
Ana Cristina De Castro1, Ivan Ortega-Deballon2
1Facultad de Medicina y Ciencias de la Salud. Departamento de Enfermería, Universidad de Alcala, Alcala de Henares, Madrid, Spain.
BMJ Open
|October 21, 2020
Summary
Nodding syndrome (NS) is a childhood encephalopathy with limited research. This scoping review will map existing knowledge to identify research gaps and guide future interventions for this rare neurological disorder.
Area of Science:
- Neurology
- Public Health
- Pediatrics
Background:
- Nodding syndrome (NS) is a debilitating neurological disorder of unknown origin affecting children aged 3-15 years.
- First reported in the 1950s, NS predominantly impacts the Acholi community in Uganda, with cases also in Tanzania and South Sudan.
- Despite a government management algorithm, access to care is limited, and research funding is scarce, hindering progress.
Purpose of the Study:
- To conduct a comprehensive scoping review of Nodding Syndrome (NS) literature.
- To provide a broad overview of the current state of knowledge on NS.
- To identify critical research gaps and inform future research, intervention strategies, and health policies.
Main Methods:
- A systematic literature search will be performed across multiple electronic databases (PubMed/Medline, Embase, Scopus, etc.) and grey literature.
- Two independent reviewers will screen studies for inclusion and extract data.
- Data will be charted and summarized in tables and figures to map the research landscape and identify knowledge gaps.
Main Results:
- The review will synthesize findings from existing studies on NS.
- It will highlight the current understanding of NS aetiology, management, and associated stigmatization.
- Key research gaps and areas needing further investigation will be identified.
Conclusions:
- This scoping review will offer a comprehensive overview of Nodding Syndrome research.
- The findings will guide the development of targeted research agendas and effective public health interventions.
- Identifying knowledge gaps is crucial for advancing understanding and improving outcomes for affected children.

