Background The increasing stroke burden in sub-Saharan Africa far outstrips the availability of skilled human resource to provide timely and efficient acute, rehabilitative and preventive services. The objective of this study was to examine the impact of a short-term task-shifting stroke training program on the stroke knowledge of a cohort of Nigerian non-neurologist health workers (NNHWs). Methods Utilizing a quasi-experimental design, NNHWs drawn from 53 local government areas of Ogun and Oyo states participated in an intensive, multicomponent one-day stroke workshop. Stroke knowledge was evaluated before and after the training using a self-administered questionnaire. Results Out of a total of 210 NNHWs who participated in the session, 116 (55.2%) completed the pre-workshop questionnaire survey of stroke knowledge while 191 (91.0%) completed the post-workshop questionnaire survey. There were no statistically significant differences in the distribution of the age, gender and professional categories of the two groups. The participants' knowledge was significantly increased at the end of the training about stroke risk factors (p < 0.001), stroke symptoms (p < 0.001) and how stroke develops (p=0.009). The proportion of respondents who understood the FAST mnemonic increased from10.3% before the training to 90.6% at the end of the training (p < 0.001). The professional category of participants was associated with knowledge gain about swallowing test and thrombolysis. Conclusion Our data support the effectiveness of stroke-specific task-shifting training for non-neurologist health workers in a low resource setting. Interim studies with intermediate outcomes are needed to show that improved knowledge results in better care despite resource limitation. Randomized controlled trials will be useful to confirm findings and translate knowledge improvement into practical intervention.
Africa has over 1.3 billion inhabitants, with over 60% of this population residing in rural areas that have poor access to medical experts. Despite having a ridiculously huge, underserved population, very few African countries currently have any form of sustained and organized telemedicine practice, and even fewer have dedicated tele-neurology services. The ongoing COVID-19 pandemic has proved to be one of the most significant disruptors of vital sectors of human endeavor in modern times. In the healthcare sector, there is an increasing advocacy to deliver non-urgent care via telemedicine. This paper examined the current state of tele-neurology practice and infrastructural preparedness in sub-Saharan Africa. Currently, there is over 70% mobile phone penetration in most of the countries and virtually all of them have mobile internet services of different technologies and generations. Although the needed infrastructure is increasingly available, it should be improved upon. We have proposed the access, costs, ethics, and support (ACES) model as a bespoke, holistic strategy for the successful implementation and advancement of tele-neurology in sub-Saharan Africa.
Background Clinical disease registries are useful for quality improvement in care, benchmarking standards, and facilitating research. Collaborative networks established thence can enhance national and international studies by generating more robust samples and credible data and promote knowledge sharing and capacity building. This report describes the methodology, baseline data, and prospects of the Nigeria Parkinson Disease Registry. Methods This national registry was established in November 2016. Ethics approval was obtained for all sites. Basic anonymized data for consecutive cases fulfilling the United Kingdom Parkinson's Disease Brain Bank criteria (except the exclusion criterion of affected family members) are registered by participating neurologists via a secure registry website (http://www.parkinsonnigeria.com) using a minimal common data capture format. Results The registry had captured 578 participants from 5 of 6 geopolitical zones in Nigeria by July 2019 (72.5% men). Mean age at onset was 60.3 ± 10.7 years; median disease duration (interquartile range) was 36 months (18–60.5 months). Young‐onset disease (<50 years) represented 15.2%. A family history was documented in 4.5% and 7.8% with age at onset <50 and ≥ 50, respectively. The most frequent initial symptom was tremor (45.3%). At inclusion, 93.4% were on treatment (54.5% on levodopa monotherapy). Per‐capita direct cost for the registry was $3.37. Conclusions This is the first published national Parkinson's disease registry in sub‐Saharan Africa. The registry will serve as a platform for development of multipronged evidence‐based policies and initiatives to improve quality of care of Parkinson's disease and research engagement in Nigeria. © 2020 International Parkinson and Movement Disorder Society
Achieving the objectives of rolling out genomic research programs in sub-Saharan Africa depends on how prepared indigenous biomedical researchers are for this type of research. We explored the level of preparedness of biomedical researchers in a sub-Saharan African country using in-depth interviews to obtain data on their understanding of genomics and genomic research and assess their awareness of the scope of the country's code of health research ethics. Thirty biomedical researchers were interviewed. Only eight were familiar with concepts of genomics, a form of "genomic health literacy." The majority were not aware of the country's code of research ethics. This study showed that generally biomedical researchers were not genomic health literate, unaware of the code and its limitations as a source of ethical guidance for the conduct of genomic research. These findings underscore the need for educational training in genomics and creating awareness of ethical oversight for genomic research in sub-Saharan Africa.
Summary Background Understanding the genetic mechanisms underlying diseases in ancestrally diverse populations is a critical step towards the realization of the global application of precision medicine. The African and African admixed populations enable mapping of complex traits given their greater levels of genetic diversity, extensive population substructure, and distinct linkage disequilibrium patterns. Methods Here we perform a comprehensive genome-wide assessment of Parkinsons disease (PD) in 197,918 individuals (1,488 cases; 196,430 controls) of African and African admixed ancestry, characterizing population-specific risk, differential haplotype structure and admixture, coding and structural genetic variation and polygenic risk profiling. Findings We identified a novel common risk factor for PD and age at onset at the GBA1 locus (risk, rs3115534-G; OR=1.58, 95% CI = 1.37 - 1.80, P=2.397E-14; age at onset, BETA =-2.004, SE =0.57, P = 0.0005), that was found to be rare in non-African/African admixed populations. Downstream short- and long-read whole genome sequencing analyses did not reveal any coding or structural variant underlying the GWAS signal. However, we identified that this signal mediates PD risk via expression quantitative trait locus (eQTL) mechanisms. While previously identified GBA1 associated disease risk variants are coding mutations, here we suggest a novel functional mechanism consistent with a trend in decreasing glucocerebrosidase activity levels. Given the high population frequency of the underlying signal and the phenotypic characteristics of the homozygous carriers, we hypothesize that this variant may not cause Gaucher disease. Additionally, the prevalence of Gauchers disease in Africa is low. Interpretation The present study identifies a novel African-ancestry genetic risk factor in GBA1 as a major mechanistic basis of PD in the African and African admixed populations. This striking result contrasts to previous work in Northern European populations, both in terms of mechanism and attributable risk. This finding highlights the importance of understanding population-specific genetic risk in complex diseases, a particularly crucial point as the field moves toward precision medicine in PD clinical trials and while recognizing the need for equitable inclusion of ancestrally diverse groups in such trials. Given the distinctive genetics of these underrepresented populations, their inclusion represents a valuable step towards insights into novel genetic determinants underlying PD etiology. This opens new avenues towards RNA-based and other therapeutic strategies aimed at reducing lifetime risk. Research in Context Evidence Before this Study Our current understanding of Parkinsons disease (PD) is disproportionately based on studying populations of European ancestry, leading to a significant gap in our knowledge about the genetics, clinical characteristics, and pathophysiology in underrepresented populations. This is particularly notable in individuals of African and African admixed ancestries. Over the last two decades, we have witnessed a revolution in the research area of complex genetic diseases. In the PD field, large-scale genome-wide association studies in the European, Asian, and Latin American populations have identified multiple risk loci associated with disease. These include 78 loci and 90 independent signals associated with PD risk in the European population, nine replicated loci and two novel population-specific signals in the Asian population, and a total of 11 novel loci recently nominated through multi-ancestry GWAS efforts. Nevertheless, the African and African admixed populations remain completely unexplored in the context of PD genetics. Added Value of this Study To address the lack of diversity in our research field, this study aimed to conduct the first genome-wide assessment of PD genetics in the African and African admixed populations. Here, we identified a genetic risk factor linked to PD etiology, dissected African-specific differences in risk and age at onset, characterized known genetic risk factors, and highlighted the utility of the African and African admixed risk haplotype substructure for future fine-mapping efforts. We identified a novel disease mechanism via expression changes consistent with decreased GBA1 activity levels. Future large scale single cell expression studies should investigate the neuronal populations in which expression differences are most prominent. This novel mechanism may hold promise for future efficient RNA-based therapeutic strategies such as antisense oligonucleotides or short interfering RNAs aimed at preventing and decreasing disease risk. We envisage that these data generated under the umbrella of the Global Parkinsons Genetics Program (GP2) will shed light on the molecular mechanisms involved in the disease process and might pave the way for future clinical trials and therapeutic interventions. This work represents a valuable resource in an underserved population, supporting pioneering research within GP2 and beyond. Deciphering causal and genetic risk factors in all these ancestries will help determine whether interventions, potential targets for disease modifying treatment, and prevention strategies that are being studied in the European populations are relevant to the African and African admixed populations. Implications of all the Available Evidence We nominate a novel signal impacting GBA1 as the major genetic risk factor for PD in the African and African admixed populations. The present study could inform future GBA1 clinical trials, improving patient stratification. In this regard, genetic testing can help to design trials likely to provide meaningful and actionable answers. It is our hope that these findings may ultimately have clinical utility for this underrepresented population.
Background Data on non‐motor symptoms (NMS) in black Africans with Parkinson's disease (PD) are sparse. Objective To describe the profile of NMS in the Nigeria PD Registry (NPDR) cohort and explore the relationship between NMS and PD motor phenotype. Methods We conducted a cross‐sectional study of the frequency and burden of NMS, based on the non‐motor symptoms scale (NMSS) and the Chaudhuri method respectively in our cohort. Baseline demographics, disease characteristics (Hoehn and Yahr stage, MDS‐UPDRS total score and Part III motor score), motor phenotype (based on Stebbin et al's algorithm), and levodopa equivalent daily dose (LEDD) were documented. Results Data are presented for 825 PD whose mean age at study was 63.7 ± 10.1 years, female sex—221 [26.8%] while median PD duration was 36 months. PD phenotypes included tremor‐dominant 466 (56.5%), postural instability and gait disorder (PIGD) 259 (31.4%), and indeterminate 100 (12.1%). 82.6% were on treatment (median LEDD of 500 mg/24 hours). 804 (97.5%) endorsed at least 1 NMS. The median NMSS score was 26.0 while subscores for urinary and sexual function domains were significantly higher in males (P < 0.05). PIGD‐PD had more frequent NMS and higher frequency of severe/very severe NMSS burden (P = 0.000 for both). Nocturia and fatigue were the most prevalent NMS overall and across motor subtypes. PIGD phenotype and total UPDRS scores were the independent determinants of NMSS scores (P = 0.000). Conclusion The profile and burden of NMS, and association with motor subtype in our black African cohort is largely similar to descriptions from other populations.
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