R01NS134056

Bridging the treatment gap by expanding access to care for people with epilepsy in Kenya (BEACON) - Project summary/abstract

Epilepsy is responsible for about 1% of the global burden of disease, with the highest disease-related burden found in Sub-Saharan Africa.

The majority of people with epilepsy (>80%) live in low-resource settings, as is found in Kenya, where most have limited access to care.

Delay in antiseizure medication (ASM) initiation and ASM non-adherence increase the disease-related burden in terms of low quality of life, high healthcare costs, and risk for seizure-related injuries and premature death.

Our prior study at a tertiary public hospital in Western Kenya showed that only 28% of newly diagnosed people with epilepsy (PWE) returned for follow-up, indicating a large treatment gap.

Cost-effective, context-specific, and culturally appropriate interventions are critical to addressing access to care and improving epilepsy care retention and ASM adherence in PWE.

The long-term goal of our research program is to address access to care and improve epilepsy treatment outcomes across the lifespan in Western Kenya.

We hypothesize that an evidence-based, task-sharing intervention supported by patient tracking data using an epilepsy medical record system (EMRS) will provide a scalable and cost-effective approach to improving care retention, ASM adherence, and epilepsy care outcomes in Western Kenya.

Aim 1 is to build clinical and research capacity through the development of EMRS, the clinical training of less specialized staff to implement task-sharing intervention, and the mentorship of a Kenyan investigator.

Aim 2 is to evaluate the effectiveness, identify the mechanisms, and explore the sustainability of the task-sharing intervention supported by EMRS in improving epilepsy care outcomes.

We will conduct a cluster-randomized trial comparing usual care and intervention groups to quantify the intervention's effectiveness in improving epilepsy care outcomes.

Aim 3 is to conduct incremental cost-effectiveness and budget impact analysis of the intervention relative to usual care.

In a long-standing partnership with the Government of Kenya, the Academic Model Providing Access to Healthcare Partnership (AMPATH) has expanded its clinical scope of work in rural Western Kenya to address issues with chronic disease management.

The proposed research will be conducted in collaboration with AMPATH.

The study is innovative in that it will be the first intervention designed to improve access to care and epilepsy care outcomes in Western Kenya.

In addition, the clinical and research capacity-building effort will strengthen the health system capacity for epilepsy care and future independent research.

The proposed research is significant because it is expected to improve the lives of people living with epilepsy, ensure capacity building, and provide evidence-based and sustainable strategies to inform clinical practice changes and policy development to improve epilepsy care outcomes and reduce the treatment gap in resource-limited settings.

Trustees Of Indiana University

(1) TO SUPPORT EXTRAMURAL RESEARCH FUNDED BY THE NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS AND STROKE (NINDS) INCLUDING: BASIC RESEARCH THAT EXPLORES THE FUNDAMENTAL STRUCTURE AND FUNCTION OF THE BRAIN AND THE NERVOUS SYSTEM, RESEARCH TO UNDERSTAND THE CAUSES AND ORIGINS OF PATHOLOGICAL CONDITIONS OF THE NERVOUS SYSTEM WITH THE GOAL OF PREVENTING THESE DISORDERS, RESEARCH ON THE NATURAL COURSE OF NEUROLOGICAL DISORDERS, IMPROVED METHODS OF DISEASE PREVENTION, NEW METHODS OF DIAGNOSIS AND TREATMENT, DRUG DEVELOPMENT, DEVELOPMENT OF NEURAL DEVICES, CLINICAL TRIALS, AND RESEARCH TRAINING IN BASIC, TRANSLATIONAL AND CLINICAL NEUROSCIENCE. THE INSTITUTE IS THE LARGEST FUNDER OF BASIC NEUROSCIENCE IN THE US AND SUPPORTS RESEARCH ON TOPICS INCLUDING BUT NOT LIMITED TO: DEVELOPMENT OF THE NERVOUS SYSTEM, INCLUDING NEUROGENESIS AND PROGENITOR CELL BIOLOGY, SIGNAL TRANSDUCTION IN DEVELOPMENT AND PLASTICITY, AND PROGRAMMED CELL DEATH, SYNAPSE FORMATION, FUNCTION, AND PLASTICITY, LEARNING AND MEMORY, CHANNELS, TRANSPORTERS, AND PUMPS, CIRCUIT FORMATION AND MODULATION, BEHAVIORAL AND COGNITIVE NEUROSCIENCE, SENSORIMOTOR LEARNING, INTEGRATION AND EXECUTIVE FUNCTION, NEUROENDOCRINE SYSTEMS, SLEEP AND CIRCADIAN RHYTHMS, AND SENSORY AND MOTOR SYSTEMS. IN ADDITION, THE INSTITUTE SUPPORTS BASIC, TRANSLATIONAL AND CLINICAL STUDIES ON A NUMBER OF DISORDERS OF THE NERVOUS SYSTEM INCLUDING (BUT NOT LIMITED TO): STROKE, TRAUMATIC INJURY TO THE BRAIN, SPINAL CORD AND PERIPHERAL NERVOUS SYSTEM, NEURODEGENERATIVE DISORDERS, MOVEMENT DISORDERS, BRAIN TUMORS, CONVULSIVE DISORDERS, INFECTIOUS DISORDERS OF THE BRAIN AND NERVOUS SYSTEM, IMMUNE DISORDERS OF THE BRAIN AND NERVOUS SYSTEM, INCLUDING MULTIPLE SCLEROSIS, DISORDERS RELATED TO SLEEP, AND PAIN. PROGRAMMATIC AREAS, WHICH ARE PRIMARILY SUPPORTED BY THE DIVISION OF NEUROSCIENCE, ARE ALSO SUPPORTED BY THE DIVISION OF EXTRAMURAL ACTIVITIES, THE DIVISION OF TRANSLATIONAL RESEARCH, THE DIVISION OF CLINICAL RESEARCH, THE OFFICE OF TRAINING AND WORKFORCE DEVELOPMENT, THE OFFICE OF PROGRAMS TO ENHANCE NEUROSCIENCE WORKFORCE DEVELOPMENT, AND THE OFFICE OF INTERNATIONAL ACTIVITIES. (2) TO EXPAND AND IMPROVE THE SMALL BUSINESS INNOVATION RESEARCH (SBIR) PROGRAM, TO INCREASE PRIVATE SECTOR COMMERCIALIZATION OF INNOVATIONS DERIVED FROM FEDERAL RESEARCH AND DEVELOPMENT, TO INCREASE SMALL BUSINESS PARTICIPATION IN FEDERAL RESEARCH AND DEVELOPMENT, AND TO FOSTER AND ENCOURAGE PARTICIPATION OF SOCIALLY AND ECONOMICALLY DISADVANTAGED SMALL BUSINESS CONCERNS AND WOMEN-OWNED SMALL BUSINESS CONCERNS IN TECHNOLOGICAL INNOVATION. TO UTILIZE THE SMALL BUSINESS TECHNOLOGY TRANSFER (STTR) PROGRAM, TO STIMULATE AND FOSTER SCIENTIFIC AND TECHNOLOGICAL INNOVATION THROUGH COOPERATIVE RESEARCH AND DEVELOPMENT CARRIED OUT BETWEEN SMALL BUSINESS CONCERNS AND RESEARCH INSTITUTIONS, TO FOSTER TECHNOLOGY TRANSFER BETWEEN SMALL BUSINESS CONCERNS AND RESEARCH INSTITUTIONS, TO INCREASE PRIVATE SECTOR COMMERCIALIZATION OF INNOVATIONS DERIVED FROM FEDERAL

93.989 - International Research and Research Training

National Institute of Neurological Disorders and Stroke (NNDS) [HHS - NIH]

Fogarty International Center (FIC) [HHS - NIH]

Indianapolis, Indiana 462025218 United States

Single Zip Code

Global Brain and Nervous System Disorders Research Across the Lifespan (R01 Clinical Trials Optional) (PAR-22-097)

Amendment Since initial award the total obligations have increased 50352% from $1,000 to $504,521.