bluuebunny/crossref_metadata_2025_split huggingface dataset:
JICNA in 2018
Authors: Newton Charles , Hameed Biju A 
Published: December 2019

2018 is the fourth year of the Journal of the International Child Neurology Association (JICNA), and continues to publish papers which are open access, without publication fees. JICNA was set up to: i) promote child neurology throughout the world, in particular encourage papers from low and middle income countries; ii) provide peer review scientifically sound papers on child neurology; iii) provide open access, so that papers can be accessed from anywhere free of charge in the world. In order to achieve these goals we ask members of ICNA contribute to making this a rigorous and vibrant journal, by submitting papers (particularly research papers), reviewing papers in a timely manner and if they have the time and energy put themselves forward as a section editor.
There remain significant challenges in reviewing papers in timely manner and soliciting research based papers. Some reviewers are excellent, reviewing the papers quickly and thoroughly. In particular we would like to commend Professors Lieven Lagae and Jo Wilmshurst, who have reviewed more than four papers in a timely manner. We would also like to thank the following people who have reviewed papers since the start of the journal: Amina Abubakar, Banu Anlar, Harry Chugani, Paolo Curatolo, Russell Dale, Marilisa Guerreiro, Samson Gwer, Richard Idro, Symon Kariuki, Manju Kurian, Ming Lim, Lokesh Lingappa, Andrew Lux, Linda de Meirleir, Lakshmi Nagarajan, Robert Ouvrier, Raili Riikonen, Arushi Saini, Michael Shevell, Pratibha Singhi, Takao Takahashi, Ingrid Tein, Ruth Williams.
We are still looking for section editors for the journal, who show commitment to the journal. We have suggested the following criteria: i) contribute at least two papers (one research and one review); ii) review at least two papers within 2 weeks; iii) be prepared to help people from low resource areas to analyse and write up their research; and iv) have acknowledged expertise in the area of section (reference from another person in the field). This does represent considerable commitment in terms of time and energy. Please contact us if you would like to be and can commit to be a section editor.
Papers in JICNA can be accessed through the JICNA web site, and through CrossRef, Google Scholar and are distributed under the terms of the Creative Commons Attribution License. In 2018 we hope that JICNA will be recognised by other free search engines.
Development of a Duchenne Muscular Dystrophy registry for children in South Africa to optimize care
Authors: Jalloh Alhaji Alusine , Mathiassen Wendy , Wessels Tina-Marié , Ndondo Alvin , Wilmshurst Jo M 
Published: December 2019

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.
The association between human herpes viruses and acute symptomatic seizures in Kenyan children
Authors: Kariuki Symon M , Schubart Christian , Newton Charles RJC 
Published: December 2019

Background
In malaria endemic areas, where up to 70% of children have peripheral parasitaemia, it is unclear why some children develop seizures. Human herpes viruses are common causes of febrile seizures. We investigated the hypothesis that seizures in children admitted to hospital are caused by concomitant human herpes virus infections.
Methods
We examined the presence of parasitaemia in plasma and viruses in cerebrospinal fluid (CSF) of 100 children with acute symptomatic seizures (84% with complex acute symptomatic seizures (focal, repetitive or prolonged)) and in 45 children without seizures using polymerase chain reaction. The analysis compared the distribution of human herpes virus between children with acute symptomatic seizures and those without these seizures by computing odds ratios using a logistic regression accounted for potential confounders.
Results
Human herpes viruses 6 & 7 were found in the CSF of 22% of children with acute symptomatic seizures and in 24% of those without seizures, and overall, there was no association with acute symptomatic seizures ((adjusted odds ratio (OR)=1.48 (95%CI, 0.54-4.05), p=0.448) nor complex acute symptomatic seizures (OR=2.34 (95%CI, 0.92-5.97), p=0.075). Human herpes virus 7 was significantly associated with complex acute symptomatic seizures (OR=8.80 (95%CI, 1.20-64.84), p=0.033), while herpes virus 6 was not (OR=1.71 (95%CI, 0.55-5.30), p=0.351). The logistic regression model with significant association for human herpes virus 7 and complex acute symptomatic seizures accounted for falciparum malaria, malnutrition and CSF protein levels, whose inclusion effect modified the OR of a baseline model by 81%.
Conclusions
Human herpes virus 7 but not 6 is associated with common complex acute symptomatic seizures in a malaria endemic area in Kenya. Viruses should be screened in children admitted with acute symptomatic seizures.
The use of the ketogenic diet in the treatment of epileptic encephalopathies
Authors: Caraballo Roberto 
Published: December 2019

Epileptic encephalopathies(EE) are severe conditions characterized by paroxysmal activity on the electroencephalogram (EEG) that is often aggressive, seizures that are commonly multi-form and intractable, and severe cognitive and behavioral disturbances that present or worsen after the onset of epilepsy. The ketogenic diet (KD) has been shown to be effective in the treatment of refractory epileptic encephalopathies, and has been suggested as an early treatment option in very young children.
Although the experience is often anecdotal and mostly consists of case reports and case series, the aim of this study was to present our own experience and an overview of the current literature on the diet in patients with EE.
Some encephalopathies, such as epilepsy with myoclonic and atonic seizures, West syndrome, Dravet syndrome, or Lennox-Gastaut syndrome, are well recognized and known to have a good response to the ketogenic diet, while others are more rare or only recently identified, such as epilepsy with focal migrating seizures in infancy, febrile infection-related epilepsy syndrome, or myclonic status in non-progressive encephalopathy, about which little is known and the KD is only tried in sporadic cases.
EE are typically refractory to the antiepileptic drugs and the KD should be considered earlier in the therapeutic scheme of these severe epileptic syndromes. The KD including the oral formula may be considered in all pediatric patients with EE even in infancy.
Creating new drugs design patterns.Step one.
Pharmaceutical development
Authors: Basevich Anna V. , Dzjuba Anatoliy S. , Kaukhova Irina E. , Andreeva Polina I. 
Published: December 2019

To optimize the process of pharmaceutical development, it is necessary to take into account the timeframes of the processes and to track all its key stages. To do this, it is necessary to create an algorithm for conducting research, taking into account the modern approach to pharmaceutical development the concept of Quality by Design.
The aim of this work was to create an algorithm of actions in conducting research when developing a new drug that can be used in the production process.
Flowcharts were used for depicting algorithms. To account the timeframes of the processes, a Gantt diagram was used.
The process of pharmaceutical development when launching a new generic drug has been studied at an operating pharmaceutical company. An algorithm for the actions of staff involved in research is proposed The algorithm minds the concept of Quality by Design. A temporary Gannta scheme and a project manager's control card for the process of pharmaceutical development of a generic drug have been developed.
Based on the results of the work, an algorithm of actions in conducting research when developing a new drug that can be used in the production process was proposed.
Optimizing the potential of children learning in science (clis) with brain gym: review on human circulatory concepts
Authors: Sele Yunawati 
Published: December 2019

Learning innovation is an effort to improve the quality of learning. One form of innovation is the integration of brain gym learning techniques and various learning models, including the Children Learning in Science (CLIS) model. However, so far, there has never been a study of learning innovations through the integration of brain gym techniques with the CLIS model. This study aims at finding out the optimizing of the Children Learning in Science (CLIS) models with brain gym to empower students' human circulatory conception. This study is quasi-experimental research of pretest-posttest Nonequivalent control group design. The population of this study was the students of class XI MIA SMA Negeri 7 Kupang, which consisted of 173 students. The sample of this study were students of class XI MIA1 and XI MIA 2, which consisted of 61 students. The instrument used was a test of human circulatory conception developed by Andriani (2017). The results showed that the increase in students' human circulatory conception in CLIS learning combined with a gym is 40.61% higher than the increase in students' human circulatory conception in CLIS learning. It can be concluded that the application of brain gym can optimize Children Learning In Science (CLIS) potential in empowering students' human circulatory conception.
Selling arak is a business opportunity in sidemen village
Authors: Astuti Ni Wayan Wahyu , Yulianthi Ayu Dwi , Ginaya Gede , Susyarini Ni Putu Wiwiek Ary 
Published: December 2019

Arak Bali is a traditional Balinese alcoholic beverage that is still popular in this modern era. Balinese people are already very familiar with this type of alcoholic drink, especially those who are young or who have religious ceremonies. Arak Bali is widely produced in Sidemen village, Karangasem Regency. This study applies a descriptive qualitative research method. The data were collected through participating observation, interviews with the community in Sidemen village as well as a literature study of Arak Bali. The study found, so far Arak needs have been widespread, from the religious need to commodify into the needs of tourism, especially in bars and restaurants. The Arak cocktail has become a spirit in beverage blends, which can be found in the bars and restaurants in Bali. Therefore, this type of beverage is still an item that has high value in the economic sector as well as support for the life of farmers in Sidemen village. This condition makes farmers in the village of Sidemen to consistently produce wine and retain their legacy.
Patients’ Measurement Priorities for Remote Measurement Technologies to Aid Chronic Health Conditions: Qualitative Analysis
Authors: Simblett Sara , Matcham Faith , Curtis Hannah , Greer Ben , Polhemus Ashley , Novák Jan , Ferrao Jose , Gamble Peter , Hotopf Matthew , Narayan Vaibhav , Wykes Til ,   Remote Assessment of Disease and Relapse – Central Nervous System (RADAR-CNS) Consortium
Published: December 2019

Background
Remote measurement technology (RMT), including the use of mobile phone apps and wearable devices, may provide the opportunity for real-world assessment and intervention that will streamline clinical input for years to come. In order to establish the benefits of this approach, we need to operationalize what is expected in terms of a successful measurement. We focused on three clinical long-term conditions where a novel case has been made for the benefits of RMT: major depressive disorder (MDD), multiple sclerosis (MS), and epilepsy.

Objective
The aim of this study was to conduct a consultation exercise on the clinical end point or outcome measurement priorities for RMT studies, drawing on the experiences of people with chronic health conditions.

Methods
A total of 24 participants (16/24 women, 67%), ranging from 28 to 65 years of age, with a diagnosis of one of three chronic health conditions―MDD, MS, or epilepsy―took part in six focus groups. A systematic thematic analysis was used to extract themes and subthemes of clinical end point or measurement priorities.

Results
The views of people with MDD, epilepsy, and MS differed. Each group highlighted unique measurements of importance, relevant to their specific needs. Although there was agreement that remote measurement could be useful for tracking symptoms of illness, some symptoms were specific to the individual groups. Measuring signs of wellness was discussed more by people with MDD than by people with MS and epilepsy. However, overlap did emerge when considering contextual factors, such as life events and availability of support (MDD and epilepsy) as well as ways of coping (epilepsy and MS).

Conclusions
This is a unique study that puts patients’ views at the forefront of the design of a clinical study employing novel digital resources. In all cases, measuring symptom severity is key; people want to know when their health is getting worse. Second, symptom severity needs to be placed into context. A holistic approach that, in some cases, considers signs of wellness as well as illness, should be the aim of studies employing RMT to understand the health of people with chronic conditions.
Equipping Learners to Evaluate Online Health Care Resources: Longitudinal Study of Learning Design Strategies in a Health Care Massive Open Online Course
Authors: Blakemore Louise M , Meek Sarah E M , Marks Leah K 
Published: December 2019

Background
The digital revolution has led to a boom in the number of available online health care resources. To navigate these resources successfully, digital literacy education is required. Learners who can evaluate the reliability and validity of online health care information are likely to be more effective at avoiding potentially dangerous misinformation. In addition to providing health care education, massive open online courses (MOOCs) are well positioned to play a role in providing digital literacy education in this context.

Objective
This study focused on learners enrolled in a MOOC on cancer genomics. The aim of this study was to evaluate the efficacy of a series of digital literacy–related activities within this course. This was an iterative study, with changes made to digital literacy–related activities in 4 of the 8 runs of the course.

Methods
This mixed methods study focused on learner engagement with the digital literacy–related activities, including the final course written assignment. Quantitative data including the number of references listed in each written assignment were compared between successive runs. Qualitative data in the form of learner comments on discussion forums for digital literacy–related tasks were evaluated to determine the impact of these educational activities.

Results
Using the number of references included for each final course assignment as an indicator of digital literacy skills, the digital literacy–related activities in the final 2 runs were judged to be the most successful. We found a statistically significant increase in the number of references cited by learners in their final written assignments. The average number of references cited in Run 8 was significantly higher (3.5) than in Run 1 (1.8) of the MOOC (P=.001). Learner comments in Runs 7 and 8 showed that a poll in which learners were asked to select which of 4 online resources was reliable was effective in stimulating learner discussion about how to evaluate resource reliability.

Conclusions
Similar to many health care MOOCs, the course studied here had a heterogeneous group of learners, including patients (and their families), the public, health care students, and practitioners. Carefully designing a range of digital literacy–related activities that would be beneficial to this heterogenous group of learners enabled learners to become more effective at evaluating and citing appropriate online resources within their written assignments.
Feasibility of an Electronic Health Tool to Promote Physical Activity in Primary Care: Pilot Cluster Randomized Controlled Trial
Authors: Agarwal Payal , Kithulegoda Natasha , Bouck Zachary , Bosiak Beth , Birnbaum Ilana , Reddeman Lindsay , Steiner Liane , Altman Liora , Mawson Robin , Propp Roni , Thornton Jane , Ivers Noah 
Published: December 2019

Background
Physical inactivity is associated with increased health risks. Primary care providers (PCPs) are well positioned to support increased physical activity (PA) levels through screening and provision of PA prescriptions. However, PCP counseling on PA is not common.

Objective
This study aimed to assess the feasibility of implementing an electronic health (eHealth) tool to support PA counseling by PCPs and estimate intervention effectiveness on patients’ PA levels.

Methods
A pragmatic pilot study was conducted using a stepped wedge cluster randomized trial design. The study was conducted at a single primary care clinic, with 4 pre-existing PCP teams. Adult patients who had a periodic health review (PHR) scheduled during the study period were invited to participate. The eHealth tool involved an electronic survey sent to participants before their PHR via an email or a tablet; data were used to automatically produce tailored resources and a PA prescription in the electronic medical record of participants in the intervention arm. Participants assigned to the control arm received usual care from their PCP. Feasibility was assessed by the proportion of completed surveys and patient-reported acceptability and fidelity measures. The primary effectiveness outcome was patient-reported PA at 4 months post-PHR, measured as metabolic equivalent of task (MET) minutes per week. Secondary outcomes assessed determinants of PA, including self-efficacy and intention to change based on the Health Action Process Approach behavior change theory.

Results
A total of 1028 patients receiving care from 34 PCPs were invited to participate and 530 (51.55%) consented (intervention [n=296] and control [n=234]). Of the participants who completed a process evaluation, almost half (88/178, 49.4%) stated they received a PA prescription, with only 42 receiving the full intervention including tailored resources from their PCP. A cluster-level linear regression analysis yielded a non–statistically significant positive difference in MET-minutes reported per week at follow-up between intervention and control conditions (mean difference 1027; 95% CI −155 to 2209; P=.09). No statistically significant differences were observed for secondary outcomes.

Conclusions
Our results suggest that it is feasible to build an eHealth tool that screens and provides tailored resources for PA in a primary care setting but suboptimal intervention fidelity suggests greater work must be done to address PCP barriers to resource distribution. Participant responses to the primary effectiveness outcome (MET-minutes) were highly variable, reflecting a need for more robust measures of PA in future trials to address limitations in patient-reported data.

Trial Registration
ClinicalTrials.gov NCT03181295; https://clinicaltrials.gov/ct2/show/NCT03181295
Mobile Health Daily Life Monitoring for Parkinson Disease: Development and Validation of Ecological Momentary Assessments
Authors: Habets Jeroen , Heijmans Margot , Herff Christian , Simons Claudia , Leentjens Albert FG , Temel Yasin , Kuijf Mark , Kubben Pieter 
Published: December 2019

Background
Parkinson disease monitoring is currently transitioning from periodic clinical assessments to continuous daily life monitoring in free-living conditions. Traditional Parkinson disease monitoring methods lack intraday fluctuation detection. Electronic diaries (eDiaries) hold the potential to collect subjective experiences on the severity and burden of motor and nonmotor symptoms in free-living conditions.

Objective
This study aimed to develop a Parkinson disease–specific eDiary based on ecological momentary assessments (EMAs) and to explore its validation.

Methods
An observational cohort of 20 patients with Parkinson disease used the smartphone-based EMA eDiary for 14 consecutive days without adjusting free-living routines. The eDiary app presented an identical questionnaire consisting of questions regarding affect, context, motor and nonmotor symptoms, and motor performance 7 times daily at semirandomized moments. In addition, patients were asked to complete a morning and an evening questionnaire.

Results
Mean affect correlated moderate-to-strong and moderate with motor performance (R=0.38 to 0.75; P<.001) and motor symptom (R=0.34 to 0.50; P<.001) items, respectively. The motor performance showed a weak-to-moderate negative correlation with motor symptoms (R=−0.31 to −0.48; P<.001). Mean group answers given for on-medication conditions vs wearing-off-medication conditions differed significantly (P<.05); however, not enough questionnaires were completed for the wearing-off-medication condition to reproduce these findings on individual levels.

Conclusions
We presented a Parkinson disease–specific EMA eDiary. Correlations between given answers support the internal validity of the eDiary and underline EMA’s potential in free-living Parkinson disease monitoring. Careful patient selection and EMA design adjustment to this targeted population and their fluctuations are necessary to generate robust proof of EMA validation in future work. Combining clinical Parkinson disease knowledge with practical EMA experience is inevitable to design and perform studies, which will lead to the successful integration of eDiaries in free-living Parkinson disease monitoring.