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  • The International Child Neurology Association (ICNA)  (6)
  • 1
    Online Resource
    Online Resource
    The International Child Neurology Association (ICNA) ; 2019
    In:  Journal of the International Child Neurology Association ( 2019-12-28)
    In: Journal of the International Child Neurology Association, The International Child Neurology Association (ICNA), ( 2019-12-28)
    Abstract: Background Most children with epilepsy reside in resource-limited regions such as sub-Saharan Africa, where the majority of studies have been conducted in rural areas with limited investigations. Medical records from children with epilepsy seen at an urban hospital in Kenya were examined to provide a comprehensive description of epilepsy in children from this hospital.   Methods A retrospective observational study was conducted which involved reviewing medical records of 426 epilepsy patients (260 males and 166 females) aged 0 - 18 years, seen at Aga Khan University Hospital, Nairobi, Kenya between February 2011 and December 2014.   Results The most frequent age at presentation; documented in 29% was in infancy. Generalized seizures due to structural brain abnormalities were the most common form of epilepsy (28%). Lennox-Gastaut Syndrome was the most common electroclinical syndrome (7%). Focal seizures and focal seizures with loss of awareness were identified in 12% of the population. There were no cases of childhood absence epilepsy in this group. Brain atrophy was the most common MRI finding, occurring in a fifth of the population (20%), while cystic encephalomalacia occurred in 13%. Half (50%) of all EEG recordings performed for this cohort were abnormal. Generalized seizures due to structural brain abnormalities and Lennox-Gastaut Syndrome (LGS) were significant predictors of a treatment history of three or more AEDs. At the conclusion of the review period, 16% of the patients had not visited the clinic for more than 12 months and were considered to be lost to follow-up.   Conclusion The highest frequency of epilepsy cases was documented in children less than one year of age. Generalized seizures due to structural abnormalities and Lennox-Gastaut syndrome were the most common seizure type and syndrome. Improvement of public awareness of different types of seizures in children may increase identification of children with childhood absence epilepsy.
    Type of Medium: Online Resource
    ISSN: 2410-6410
    Language: Unknown
    Publisher: The International Child Neurology Association (ICNA)
    Publication Date: 2019
    Location Call Number Limitation Availability
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  • 2
    Online Resource
    Online Resource
    The International Child Neurology Association (ICNA) ; 2020
    In:  Journal of the International Child Neurology Association Vol. 1, No. 1 ( 2020-10-09)
    In: Journal of the International Child Neurology Association, The International Child Neurology Association (ICNA), Vol. 1, No. 1 ( 2020-10-09)
    Abstract: None
    Type of Medium: Online Resource
    ISSN: 2410-6410
    Language: Unknown
    Publisher: The International Child Neurology Association (ICNA)
    Publication Date: 2020
    Location Call Number Limitation Availability
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  • 3
    Online Resource
    Online Resource
    The International Child Neurology Association (ICNA) ; 2017
    In:  Journal of the International Child Neurology Association ( 2017-06-26)
    In: Journal of the International Child Neurology Association, The International Child Neurology Association (ICNA), ( 2017-06-26)
    Abstract: Children in low and middle income countries are 16 times more likely to die before 5 years of age compared to children in high-income countries. More than 200 million children under five in the developing world do not fulfil their potential, the major reasons appear to be poor nutrition, and limited access to education in the setting of extreme poverty. Three major factors with multiple sub-headings result in threats to the child’s brain. Namely, the background setting the child is born into and grows up in, the acquired influences of the local setting, and the available interventions for the child. The following text is an overview of these key issues and their subheadings, for children residing in low and middle income countries. Whilst many influencers are beyond the control of health practitioners, such as conflicts of war and impact of famine, there are relatively cost effective interventions which can have a massive ripple effect in reducing diseases of high burden such as effective vaccination programs, insectide immerced nets for beds, and effective pigs pens. There is need for viable protocols to be adapted for the local setting, for simple, cost effective diagnostic tools to be developed and for health practitioners to be equipped with the skills to cope with neurological disorders, especially those prevalent in and specific to low and middle income countries. 
    Type of Medium: Online Resource
    ISSN: 2410-6410
    Language: Unknown
    Publisher: The International Child Neurology Association (ICNA)
    Publication Date: 2017
    Location Call Number Limitation Availability
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  • 4
    Online Resource
    Online Resource
    The International Child Neurology Association (ICNA) ; 2019
    In:  Journal of the International Child Neurology Association ( 2019-05-28)
    In: Journal of the International Child Neurology Association, The International Child Neurology Association (ICNA), ( 2019-05-28)
    Abstract: Background Duchenne Muscular Dystrophy (DMD) is the most prevalent and lethal of the inherited dystrophies.  Globally, the incidence is reported at 1 in 3500 live male births. There is currently no cure for the disease. With the possibility of gene therapy becoming available, patients who would qualify for such treatment need to be identified. Further, understanding disease expression in a population is essential to focus targeted interventions, such as corticosteroids, to ensure they are safe and effective in the local setting. By maintaining a DMD specific disease registry this information can be attained. Objective: This report describes the concept and design of the first South African DMD disease registry using Research Electronic Data Capture (REDCap)  Methods: The registry was developed using REDCap’s web-based online design, accessed through the Clinical Research Centre (CRC) in the Faculty of Health Sciences at the University of Cape Town.  Electronic case report forms were created from these clinical data using REDCap and for specific variables serial entries were possible relating to disease progression. International data standards were adopted as proposed by TREAT-NMD, a global network of registries on DMD to ensure our data is compatible with this and other international registries. Results: Retrospective data entry combined with dynamic prospective recording of data was utilized in this project. Building on an existing database, 100 confirmed DMD boys are currently eligible for inclusion into the registry.  As our registry is an on-going study, sequential analysis of accumulated data will be done going forward to review trends on our patients with DMD.   Conclusions: This report describes the concept and design of a DMD registry and the steps followed to its establishment with REDCap. The focus is to consolidate clinical and genetic information on South African patients with DMD, commencing with the local centre’s patient cohort but rolling out access to other South African centres to create a national resource, which is internationally relevant.  Ideally this template could be duplicated in the conceptualisation of disease registries for other key conditions.        
    Type of Medium: Online Resource
    ISSN: 2410-6410
    Language: Unknown
    Publisher: The International Child Neurology Association (ICNA)
    Publication Date: 2019
    Location Call Number Limitation Availability
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  • 5
    Online Resource
    Online Resource
    The International Child Neurology Association (ICNA) ; 2015
    In:  Journal of the International Child Neurology Association ( 2015-03-01)
    In: Journal of the International Child Neurology Association, The International Child Neurology Association (ICNA), ( 2015-03-01)
    Abstract: Status epilepticus is defined as generalised convulsions lasting 30 minutes or longer, which are either continuous, or where there is failure regain consciousness between seizures. The longer the time taken to gain control of seizures the worse the neurological outcome for the child and the harder it is to terminate the seizures. The outcome is further influenced by the underlying aetiology. Treatment of status epilepticus consists of four stages - pre-hospital treatment, emergency department, in-hospital treatment (ward or high care) and anaesthesia (ICU). There are numerous protocols available world-wide. Most are based on the available facilities and the anecdotal preferences of the units involved. Beyond the first level of intervention there are no large evidence based guidelines which identify the optimal intervention. Newer agents are increasingly being used, but studies to assess the true efficacy of these are not available. Further, protocols differ between resource poor countries compared to equipped countries where the capacity to provide intensive care support and expensive medical interventions is limited. There are two targets in the management of status epilepticus namely the rapid identification of the underlying aetiology as this affects treatment and prognosis and the early initiation towards terminating status epilepticus which decreases morbidity and mortality.
    Type of Medium: Online Resource
    ISSN: 2410-6410
    Language: Unknown
    Publisher: The International Child Neurology Association (ICNA)
    Publication Date: 2015
    Location Call Number Limitation Availability
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  • 6
    Online Resource
    Online Resource
    The International Child Neurology Association (ICNA) ; 2019
    In:  Journal of the International Child Neurology Association ( 2019-07-25)
    In: Journal of the International Child Neurology Association, The International Child Neurology Association (ICNA), ( 2019-07-25)
    Abstract: Emerging genetic therapies for rare disorders at high cost, cannot realistically address the global burden of disease. Stakeholders must develop new pathways to ensure safe, fair and sustainable provision of such therapies.
    Type of Medium: Online Resource
    ISSN: 2410-6410
    Language: Unknown
    Publisher: The International Child Neurology Association (ICNA)
    Publication Date: 2019
    Location Call Number Limitation Availability
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