Project

Improving diagnostics, treatment and care in people living with early-onset epilepsy in Rwanda

Code
13v15622
Duration
01 September 2022 → 31 August 2024
Funding
Federal funding: VLIR-UOS
Research disciplines
  • Medical and health sciences
    • General diagnostics
    • Neurological and neuromuscular diseases
    • Pediatrics
    • Health promotion and policy
Keywords
early onset epilepsy subsaharan africa rwanda genetics educative training diagnotiscs treatment comprehensive care
 
Project description

Epilepsy is one of the most common chronic neurological disorders affecting 70 million people worldwide of whom 85% live in low- and middle income countries. The epilepsy treatment gap, which includes the diagnosis gap, amounts to 80% in sub-Saharan Africa (SSA). In 80% of people living with epilepsy in SSA, their first seizure appears before 18 years of age. Early-onset epilepsies (EOE) are important causes for childhood morbidity in the African continent. The prevalence of epilepsy in Rwanda is amongst the highest of SSA, estimated at 4.9%, with an epilepsy treatment gap of 91.5% due to diagnostic and therapeutic limitations in rural areas. Causes underlying the high prevalence in Rwanda have never been thoroughly identified. In Africa, epilepsy is often secondary to perinatal insults, early-life trauma or central nervous system infections Nonetheless, the cause of epilepsy in over 60% of African children is unknown, suggesting a possible genetic origin. The relevance of knowledge on epilepsy genetics in EOE to patient care is particularly evident as early genetic testing can confirm the diagnosis and direct treatment, potentially improving prognosis and quality of life. However, access to genetic testing is non-existent in Rwanda. This project will 1) strengthen the research capacity on EOE by establishing an interdisciplinary research group supporting neurologists, geneticists, residents and PhD students in driving research on the genetic causes of EOE in Rwanda, and 2) improve capacity for accurate diagnosis, treatment and comprehensive care in people with EOE by a) the implementation of genetic testing, b) the educative training of community and primary healthcare providers, and c) the improvement of access to community-based rehabilitation in remote areas.