Ensemble-imbalance-based classification for amyotrophic lateral sclerosis prognostic prediction: identifying short-survival patients at diagnosis.

Prognosticating Amyotrophic Lateral Sclerosis (ALS) presents a formidable challenge due to patients exhibiting different onset sites, progression rates, and survival times. In this study, we have developed and evaluated Machine Learning (ML) algorithms that integrate Ensemble and Imbalance Learning techniques to classify patients into Short and Non-Short survival groups based on data collected during diagnosis. We aimed to identify individuals at high risk of mortality within 24 months of symptom onset through analysis of patient data commonly encountered in daily clinical practice. Our Ensemble-Imbalance approach underwent evaluation employing six ML algorithms as base classifiers. Remarkably, our results outperformed those of individual algorithms, achieving a Balanced Accuracy of 88% and a Sensitivity of 96%. Additionally, we used the Shapley Additive Explanations framework to elucidate the decision-making process of the top-performing model, pinpointing the most important features and their correlations with the target prediction. Furthermore, we presented helpful tools to visualize and compare patient similarities, offering valuable insights. Confirming the obtained results, our approach could aid physicians in devising personalized treatment plans at the time of diagnosis or serve as an inclusion/exclusion criterion in clinical trials.

A method based on non-ionizing microwave radiation for ancillary diagnosis of osteoporosis: a pilot study.

BACKGROUND: Osteoporosis is a condition characterized by low bone mineral density, which typically leads to fractures and reduced quality of life. Currently, diagnostic devices used to assess this condition (e.g., dual-energy X-ray absorptiometry) are very costly, making it infeasible to meet the demand for testing in most countries. Therefore, we proposed a preclinical validation of a prototype called Osseus in an attempt to enhance osteoporosis screening tests and alleviate their costs. Osseus is a device developed to assist bone mineral density classification. It integrates a microcontroller into other peripheral devices to measure the attenuation at the middle phalanx of the middle finger, with two antennas operating at the 2.45 GHz frequency. RESULTS: We conducted tests with plaster, poultry, and porcine bones. A comparison of the measurements of the original and mechanically altered samples demonstrated that the device can handle the complexity of the tissues within the bone structure and characterize its microarchitecture. CONCLUSIONS: Osseus is a device that has been preliminarily validated. Ionising radiation needed for DXA tests is replaced by non-ionising microwave electromagnetic radiation. Osseus enables early detection of osteoporosis, reduces costs, and optimizes high-complexity testing referrals. There is a lack of validation studies with the reference/gold standard that are currently under development.

Stochastic Petri net model describing the relationship between reported maternal and congenital syphilis cases in Brazil.

INTRODUCTION: Syphilis is a sexually transmitted disease (STD) caused by Treponema pallidum subspecies pallidum. In 2016, it was declared an epidemic in Brazil due to its high morbidity and mortality rates, mainly in cases of maternal syphilis (MS) and congenital syphilis (CS) with unfavorable outcomes. This paper aimed to mathematically describe the relationship between MS and CS cases reported in Brazil over the interval from 2010 to 2020, considering the likelihood of diagnosis and effective and timely maternal treatment during prenatal care, thus supporting the decision-making and coordination of syphilis response efforts. METHODS: The model used in this paper was based on stochastic Petri net (SPN) theory. Three different regressions, including linear, polynomial, and logistic regression, were used to obtain the weights of an SPN model. To validate the model, we ran 100 independent simulations for each probability of an untreated MS case leading to CS case (PUMLC) and performed a statistical t-test to reinforce the results reported herein. RESULTS: According to our analysis, the model for predicting congenital syphilis cases consistently achieved an average accuracy of 93% or more for all tested probabilities of an untreated MS case leading to CS case. CONCLUSIONS: The SPN approach proved to be suitable for explaining the Notifiable Diseases Information System (SINAN) dataset using the range of 75-95% for the probability of an untreated MS case leading to a CS case (PUMLC). In addition, the model's predictive power can help plan actions to fight against the disease.

National registry for amyotrophic lateral sclerosis: a systematic review for structuring population registries of motor neuron diseases.

BACKGROUND: This article comprises a systematic review of the literature that aims at researching and analyzing the frequently applied guidelines for structuring national databases of epidemiological surveillance for motor neuron diseases, especially Amyotrophic Lateral Sclerosis (ALS). METHODS: We searched for articles published from January 2015 to September 2019 on online databases as PubMed - U.S. National Institutes of Health's National Library of Medicine, Scopus, Science Direct, and Springer. Subsequently, we analyzed studies that considered risk factors, demographic data, and other strategic data for directing techno-scientific research, calibrating public health policies, and supporting decision-making by managers through a systemic panorama of ALS. RESULTS: 2850 studies were identified. 2400 were discarded for not satisfying the inclusion criteria, and 435 being duplicated or published in books or conferences. Hence, 15 articles were elected. By applying quality criteria, we then selected six studies to compose this review. Such researches featured registries from the American (3), European (2), and Oceania (1) continent. All the studies specified the methods for data capture and the patients' recruitment process for the registers. DISCUSSIONS: From the analysis of the selected papers and reported models, it is noticeable that most studies focused on the prospect of obtaining data to characterize research on epidemiological studies. Demographic data (ID01) are present in all the registries, representing the main collected data category. Furthermore, the general health history (ID02) is present in 50% of the registries analyzed. Characteristics such as access control, confidentiality and data curation. We observed that 50% of the registries comprise a patient-focused web-based self-report system. CONCLUSION: The development of robust, interoperable, and secure electronic registries that generate value for research and patients presents itself as a solution and a challenge. This systematic review demonstrated the success of a population register requires actions with well-defined development methods, as well as the involvement of various actors of civil society.

Biomedical signals and machine learning in amyotrophic lateral sclerosis: a systematic review.

INTRODUCTION: The use of machine learning (ML) techniques in healthcare encompasses an emerging concept that envisages vast contributions to the tackling of rare diseases. In this scenario, amyotrophic lateral sclerosis (ALS) involves complexities that are yet not demystified. In ALS, the biomedical signals present themselves as potential biomarkers that, when used in tandem with smart algorithms, can be useful to applications within the context of the disease. METHODS: This Systematic Literature Review (SLR) consists of searching for and investigating primary studies that use ML techniques and biomedical signals related to ALS. Following the definition and execution of the SLR protocol, 18 articles met the inclusion, exclusion, and quality assessment criteria, and answered the SLR research questions. DISCUSSIONS: Based on the results, we identified three classes of ML applications combined with biomedical signals in the context of ALS: diagnosis (72.22%), communication (22.22%), and survival prediction (5.56%). CONCLUSIONS: Distinct algorithmic models and biomedical signals have been reported and present promising approaches, regardless of their classes. In summary, this SLR provides an overview of the primary studies analyzed as well as directions for the construction and evolution of technology-based research within the scope of ALS.

miRNAs as biomarkers for early cancer detection and their application in the development of new diagnostic tools.

Over the last decades, microRNAs (miRNAs) have emerged as important molecules associated with the regulation of gene expression in humans and other organisms, expanding the strategies available to diagnose and handle several diseases. This paper presents a systematic review of literature of miRNAs related to cancer development and explores the main techniques used to quantify these molecules and their limitations as screening strategy. The bibliographic research was conducted using the online databases, PubMed, Google Scholar, Web of Science, and Science Direct searching the terms "microRNA detection", "miRNA detection", "miRNA and prostate cancer", "miRNA and cervical cancer", "miRNA and cervix cancer", "miRNA and breast cancer", and "miRNA and early cancer diagnosis". Along the systematic review over 26,000 published papers were reported, and 252 papers were returned after applying the inclusion and exclusion criteria, which were considered during this review. The aim of this study is to identify potential miRNAs related to cancer development that may be useful for early cancer diagnosis, notably in the breast, prostate, and cervical cancers. In addition, we suggest a preliminary top 20 miRNA panel according to their relevance during the respective cancer development. Considering the progressive number of new cancer cases every year worldwide, the development of new diagnostic tools is critical to refine the accuracy of screening tests, improving the life expectancy and allowing a better prognosis for the affected patients.

Analyzing the reach of public health campaigns based on multidimensional aspects: the case of the syphilis epidemic in Brazil.

BACKGROUND: Public health campaigns aim to promote awareness, increase knowledge, and encourage a target population to adopt desirable attitudes and behaviors. Assessing their reach from a multidimensional perspective through information technology can facilitate the development of more effective campaigns in public health response. METHODS: We scrutinized seven data sources from different perspectives to assess a health campaign launched in Brazil named "Syphilis No!". This campaign is part of an Agenda for strategic actions to reduce syphilis in Brazil which includes dissemination of educommunication materials to remind people of the importance of syphilis prevention, emphasizing "test, treat and cure" concept. We developed a multidimensional analysis framework and implemented an information system to process the data from a time series perspective, and assessed the effects over time, both before and after the campaign. We descriptively analyzed data related to the campaign, including e-news, search engine activity, online courses, serological tests, medication distribution and case notification rates. FINDINGS: Regarding search engine activity, we observed the highest volume of search during the first week of campaigns in 2018 (between November 25th and December 7th). Nevertheless, analyzing this data in a trend plot revealed sustained growth until the end of 2019. From March 2018, the amount of e-news posts related to syphilis in Brazil, indexed by Google, followed an increasing slope, with a record peak in October 2019. In addition, data showed that 12 new online courses related to syphilis disease were available on the AVASUS Platform Learning Management System (LMS), to support efforts to promote lifelong learning for health professionals, teachers, and students. These courses reached more than 22,000 students between February 2019 and September 2020. Serological test data showed that the number of tests carried out in 2019 were 375·18% more than in 2015, even accounting for population growth. Finally, starting from the middle of 2018, the syphilis case notification rates followed a decreasing curve. INTERPRETATION: From this perspective, the "Syphilis No!" Project was a positive influence, inducing policy to fight syphilis in Brazil by supporting the implementation of a testing, treatment, and cure agenda (#TesteTrateCure). Certainly, this inference was made by analyzing multidimensional aspects and because, prior to 2018, the country had largely neglected this disease, with no records of communication actions during that period.

Machine learning applied to retinal image processing for glaucoma detection: review and perspective.

INTRODUCTION: This is a systematic review on the main algorithms using machine learning (ML) in retinal image processing for glaucoma diagnosis and detection. ML has proven to be a significant tool for the development of computer aided technology. Furthermore, secondary research has been widely conducted over the years for ophthalmologists. Such aspects indicate the importance of ML in the context of retinal image processing. METHODS: The publications that were chosen to compose this review were gathered from Scopus, PubMed, IEEEXplore and Science Direct databases. Then, the papers published between 2014 and 2019 were selected . Researches that used the segmented optic disc method were excluded. Moreover, only the methods which applied the classification process were considered. The systematic analysis was performed in such studies and, thereupon, the results were summarized. DISCUSSION: Based on architectures used for ML in retinal image processing, some studies applied feature extraction and dimensionality reduction to detect and isolate important parts of the analyzed image. Differently, other works utilized a deep convolutional network. Based on the evaluated researches, the main difference between the architectures is the number of images demanded for processing and the high computational cost required to use deep learning techniques. CONCLUSIONS: All the analyzed publications indicated it was possible to develop an automated system for glaucoma diagnosis. The disease severity and its high occurrence rates justify the researches which have been carried out. Recent computational techniques, such as deep learning, have shown to be promising technologies in fundus imaging. Although such a technique requires an extensive database and high computational costs, the studies show that the data augmentation and transfer learning techniques have been applied as an alternative way to optimize and reduce networks training.

Computer-aided detection (CADe) and diagnosis (CADx) system for lung cancer with likelihood of malignancy.

BACKGROUND: CADe and CADx systems for the detection and diagnosis of lung cancer have been important areas of research in recent decades. However, these areas are being worked on separately. CADe systems do not present the radiological characteristics of tumors, and CADx systems do not detect nodules and do not have good levels of automation. As a result, these systems are not yet widely used in clinical settings. METHODS: The purpose of this article is to develop a new system for detection and diagnosis of pulmonary nodules on CT images, grouping them into a single system for the identification and characterization of the nodules to improve the level of automation. The article also presents as contributions: the use of Watershed and Histogram of oriented Gradients (HOG) techniques for distinguishing the possible nodules from other structures and feature extraction for pulmonary nodules, respectively. For the diagnosis, it is based on the likelihood of malignancy allowing more aid in the decision making by the radiologists. A rule-based classifier and Support Vector Machine (SVM) have been used to eliminate false positives. RESULTS: The database used in this research consisted of 420 cases obtained randomly from LIDC-IDRI. The segmentation method achieved an accuracy of 97 % and the detection system showed a sensitivity of 94.4 % with 7.04 false positives per case. Different types of nodules (isolated, juxtapleural, juxtavascular and ground-glass) with diameters between 3 mm and 30 mm have been detected. For the diagnosis of malignancy our system presented ROC curves with areas of: 0.91 for nodules highly unlikely of being malignant, 0.80 for nodules moderately unlikely of being malignant, 0.72 for nodules with indeterminate malignancy, 0.67 for nodules moderately suspicious of being malignant and 0.83 for nodules highly suspicious of being malignant. CONCLUSIONS: From our preliminary results, we believe that our system is promising for clinical applications assisting radiologists in the detection and diagnosis of lung cancer.

Computer-aided detection system for lung cancer in computed tomography scans: review and future prospects.

INTRODUCTION: The goal of this paper is to present a critical review of major Computer-Aided Detection systems (CADe) for lung cancer in order to identify challenges for future research. CADe systems must meet the following requirements: improve the performance of radiologists providing high sensitivity in the diagnosis, a low number of false positives (FP), have high processing speed, present high level of automation, low cost (of implementation, training, support and maintenance), the ability to detect different types and shapes of nodules, and software security assurance. METHODS: The relevant literature related to "CADe for lung cancer" was obtained from PubMed, IEEEXplore and Science Direct database. Articles published from 2009 to 2013, and some articles previously published, were used. A systemic analysis was made on these articles and the results were summarized. DISCUSSION: Based on literature search, it was observed that many if not all systems described in this survey have the potential to be important in clinical practice. However, no significant improvement was observed in sensitivity, number of false positives, level of automation and ability to detect different types and shapes of nodules in the studied period. Challenges were presented for future research. CONCLUSIONS: Further research is needed to improve existing systems and propose new solutions. For this, we believe that collaborative efforts through the creation of open source software communities are necessary to develop a CADe system with all the requirements mentioned and with a short development cycle. In addition, future CADe systems should improve the level of automation, through integration with picture archiving and communication systems (PACS) and the electronic record of the patient, decrease the number of false positives, measure the evolution of tumors, evaluate the evolution of the oncological treatment, and its possible prognosis.

Assessment of the Clinical and Functional Health Status of Patients with Amyotrophic Lateral Sclerosis during the COVID-19 Pandemic in Brazil Using Telemedicine.

This study aimed to monitor the clinical and functional progression of patients with amyotrophic lateral sclerosis (ALS) and adjust ventilatory support during the COVID-19 pandemic in Brazil using telemedicine. This longitudinal case series included five evaluations from January 2019 to June 2021. The first and second assessments were performed in person and consisted of pulmonary function, respiratory muscle strength, functionality (ALS Functional Rating Scale-Revised [ALSFRS-R]) and disease staging (King's College criteria). The use of non-invasive ventilation (NIV), ALSFRS-R, and disease staging were assessed in the third, fourth, and fifth assessments during the COVID-19 pandemic, using telemedicine. The rate of functional decline was calculated by the difference in the total score of ALSFRS-R between evaluations. A cutoff of 0.77 in the ALSFRS-R was used to characterize the speed of functional decline. Eleven patients (mean age of 51 years, eight males) were assessed. The total score of the ALSFRS-R (p < 0.01) and its motor domain (p < 0.01) reduced significantly during the pandemic. NIV prescription increased from 54.4% to 83.3%. Telemedicine helped with the clinical and functional follow-up of patients with ALS.

Electromyography as a tool to motion analysis for people with Amyotrophic Lateral Sclerosis: A protocol for a systematic review.

Biomechanical analysis of human movement plays an essential role in understanding functional changes in people with Amyotrophic Lateral Sclerosis (ALS), providing information on muscle impairment. Studies suggest that surface electromyography (sEMG) may be able to quantify muscle activity, identify levels of fatigue, assess muscle strength, and monitor variation in limb movement. In this article, a systematic review protocol will analyze the psychometric properties of the sEMG regarding the clinical data on the skeletal muscles of people with ALS. This protocol uses the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) methodological tool. A specific field structure was defined to reach each phase. Nine scientific databases (PubMed, Web of Science, Embase, Elsevier, IEEE, Google Scholar, SciELO, PEDro, LILACS E CENTRAL) were searched. The framework developed will extract data (i.e. study information, sample information, sEMG information, intervention, and outcomes) from the selected studies using a rigorous approach. The data will be described quantitatively using frequency and trend analysis methods, and heterogeneity between the included studies will be assessed using the I2 test. The risk of bias will be summarized using the most recent prediction model risk of bias assessment tool. Be sure to include relevant statistics here, such as sample sizes, response rates, P values or Confidence Intervals. Be specific (by stating the value) rather than general (eg, "there were differences between the groups"). This protocol will map out the construction of a systematic review that will identify and synthesize the advances in movement analysis of people with ALS through sEMG, using data extracted from articles.

Digital dual test syphilis/HIV detection based on Fourier Descriptors of Cyclic Voltammetry curves.

BACKGROUND: Effective and timely detection is vital for mitigating the severe impacts of Sexually Transmitted Infections (STI), including syphilis and HIV. Cyclic Voltammetry (CV) sensors have shown promise as diagnostic tools for these STI, offering a pathway towards cost-effective solutions in primary health care settings. OBJECTIVE: This study aims to pioneer the use of Fourier Descriptors (FDs) in analyzing CV curves as 2D closed contours, targeting the simultaneous detection of syphilis and HIV. METHODS: Raw CV signals are filtered, resampled, and transformed into 2D closed contours for FD extraction. Essential shape characteristics are captured through selected coefficients. A complementary geometrical analysis further extracts features like curve areas and principal axes lengths from CV curves. A Mahalanobis Distance Classifier is employed for differentiation between patient and control groups. RESULTS: The evaluation of the proposed method revealed promising results with classification performance metrics such as Accuracy and F1-Score consistently achieving values rounded to 0.95 for syphilis and 0.90 for HIV. These results underscore the potential efficacy of the proposed approach in differentiating between patient and control samples for STI detection. CONCLUSION: By integrating principles from biosensors, signal processing, image processing, machine learning, and medical diagnostics, this study presents a comprehensive approach to enhance the detection of both syphilis and HIV. This setts the stage for advanced and accessible STI diagnostic solutions.

Salus Platform: A Digital Health Solution Tool for Managing Syphilis Cases in Brazil-A Comparative Analysis.

(1) Introduction: Syphilis is a sexually transmitted infection (STI) that constitutes a serious public health problem in Brazil and worldwide; (2) Methods: This was a descriptive and exploratory study that sought to analyze and compare the characteristics of Brazilian health systems with a new platform (Salus) developed by the Laboratory of Technological Innovation in Health in the scope of notification and management of disease data, including syphilis. In addition, this analysis aimed to assess whether Salus fully meets the necessary data management fields and can be indicated as a tool to improve health management in the context of syphilis in Brazil. (3) Results: In this study, the Salus functionalities were demonstrated and compared with the current Brazilian systems by discovering the existing gaps in the evaluated systems. The gaps found may explain the delay in meeting demands, the difficulty of making routine therapeutic follow-ups, in addition to interference with the vital purpose of follow-up in the epidemiological surveillance of diseases. As a result, Salus demonstrates functionalities that surpass all others and meet case management demands in a superior way to the systems currently used in the country. (4) Conclusions: The Brazilian health information systems related to the response to syphilis do not fulfill the purpose for which they were developed. Instead, they contribute to the fragmentation of health data and information, delays in diagnosis, incomplete case management, and loss of data due to inconsistencies and inadequate reporting. In addition, they are systems without interconnection, which do not articulate epidemiological surveillance actions with primary health care. All these factors may be obscuring accurate data on syphilis in Brazil, resulting in high and unnecessary public spending and late care for users of the Unified Health System (SUS).

Text mining analysis to understand the impact of online news on public health response: case of syphilis epidemic in Brazil.

Background: To effectively combat the rising incidence of syphilis, the Brazilian Ministry of Health (MoH) created a National Rapid Response to Syphilis with actions aimed at bolstering epidemiological surveillance of acquired, congenital syphilis, and syphilis during pregnancy complemented with communication activities to raise population awareness and to increase uptake of testing that targeted mass media outlets from November 2018 to March 2019 throughout Brazil, and mainly areas with high rates of syphilis. This study analyzes the volume and quality of online news content on syphilis in Brazil between 2015 and 2019 and examines its effect on testing. Methods: The collection and processing of online news were automated by means of a proprietary digital health ecosystem established for the study. We applied text data mining techniques to online news to extract patterns from categories of text. The presence and combination of such categories in collected texts determined the quality of news that were analyzed to classify them as high-, medium-and low-quality news. We examined the correlation between the quality of news and the volume of syphilis testing using Spearman's Rank Correlation Coefficient. Results: 1,049 web pages were collected using a Google Search API, of which 630 were categorized as earned media. We observed a steady increase in the number of news on syphilis in 2015 (n = 18), 2016 (n = 26), and 2017 (n = 42), with a substantial rise in the number of news in 2018 (n = 107) and 2019 (n = 437), although the relative proportion of high-quality news remained consistently high (77.6 and 70.5% respectively) and in line with similar years. We found a correlation between news quality and syphilis testing performed in primary health care with an increase of 82.32, 78.13, and 73.20%, respectively, in the three types of treponemal tests used to confirm an infection. Conclusion: Effective communication strategies that lead to dissemination of high quality of information are important to increase uptake of public health policy actions.

Digital Alternative Communication for Individuals with Amyotrophic Lateral Sclerosis: What We Have.

Amyotrophic Lateral Sclerosis is a disease that compromises the motor system and the functional abilities of the person in an irreversible way, causing the progressive loss of the ability to communicate. Tools based on Augmentative and Alternative Communication are essential for promoting autonomy and improving communication, life quality, and survival. This Systematic Literature Review aimed to provide evidence on eye-image-based Human-Computer Interaction approaches for the Augmentative and Alternative Communication of people with Amyotrophic Lateral Sclerosis. The Systematic Literature Review was conducted and guided following a protocol consisting of search questions, inclusion and exclusion criteria, and quality assessment, to select primary studies published between 2010 and 2021 in six repositories: Science Direct, Web of Science, Springer, IEEE Xplore, ACM Digital Library, and PubMed. After the screening, 25 primary studies were evaluated. These studies showcased four low-cost, non-invasive Human-Computer Interaction strategies employed for Augmentative and Alternative Communication in people with Amyotrophic Lateral Sclerosis. The strategies included Eye-Gaze, which featured in 36% of the studies; Eye-Blink and Eye-Tracking, each accounting for 28% of the approaches; and the Hybrid strategy, employed in 8% of the studies. For these approaches, several computational techniques were identified. For a better understanding, a workflow containing the development phases and the respective methods used by each strategy was generated. The results indicate the possibility and feasibility of developing Human-Computer Interaction resources based on eye images for Augmentative and Alternative Communication in a control group. The absence of experimental testing in people with Amyotrophic Lateral Sclerosis reiterates the challenges related to the scalability, efficiency, and usability of these technologies for people with the disease. Although challenges still exist, the findings represent important advances in the fields of health sciences and technology, promoting a promising future with possibilities for better life quality.

The prevalence of risk for hearing impairment in newborns with congenital syphilis in a newborn hearing screening program (NHS).

Objective: To study the prevalence of risk for hearing impairment in neonates with congenital syphilis in a newborn hearing screening program. Study design: The study design is retrospective, documentary, and is cross-sectional. The sample consisted of newborns who were born between January 2019 and December 2021 and who underwent neonatal hearing screening in a public maternity hospital. Demographic data and the presence and specification of risk indicators for hearing impairment (RIHL) were collected. In retest cases, the results and the final score were also collected. For data analysis, the Kruskal-Wallis and Conover-Iman post-hoc tests were used, comparing the groups that passed and failed the hearing screening that had RIHL, using a significance level of p of <0.5. Results: Among the RIHL observed in the sample, prematurity was more frequent in newborns who passed the screening (55.26%) than in those who failed the test (45.67%). Congenital syphilis was the ninth most frequent RIHL (8.04%) among the newborns who passed the test and the 15th factor (3.03%), with the highest occurrence in those who failed the hearing screening. When comparing the two groups (pass and fail), we found significant differences (p < 0.05) between them. Conclusion: Congenital syphilis was the ninth risk indicator for the most common hearing impairment and, in isolation, did not present a risk for failure in neonatal hearing screening. Notably, congenital syphilis can cause late hearing loss during child development. Thus, there is an indication of audiological monitoring of these neonates.

Digital health solution for monitoring and surveillance of Amyotrophic Lateral Sclerosis in Brazil.

Amyotrophic Lateral Sclerosis (ALS) is a complex and rare neurodegenerative disease given its heterogeneity. Despite being known for many years, few countries have accurate information about the characteristics of people diagnosed with ALS, such as data regarding diagnosis and clinical features of the disease. In Brazil, the lack of information about ALS limits data for the research progress and public policy development that benefits people affected by this health condition. In this context, this article aims to show a digital health solution development and application for research, intervention, and strengthening of the response to ALS in the Brazilian Health System. The proposed solution is composed of two platforms: the Brazilian National ALS Registry, responsible for the data collection in a structured way from ALS patients all over Brazil; and the Brazilian National ALS Observatory, responsible for processing the data collected in the National Registry and for providing a monitoring room with indicators on people diagnosed with ALS in Brazil. The development of this solution was supported by the Brazilian Ministry of Health (MoH) and was carried out by a multidisciplinary team with expertise in ALS. This solution represents a tool with great potential for strengthening public policies and stands out for being the only public database on the disease, besides containing innovations that allow data collection by health professionals and/or patients. By using both platforms, it is believed that it will be possible to understand the demographic and epidemiological data of ALS in Brazil, since the data will be able to be analyzed by care teams and also by public health managers, both in the individual and collective monitoring of people living with ALS in Brazil.

Effects of a self-care educational program via telerehabilitation on quality of life and caregiver burden in amyotrophic lateral sclerosis: a single-blinded randomized clinical trial protocol.

Introduction: The implementation of a telerehabilitation protocol for self-care in the routine of caregivers of individuals with amyotrophic lateral sclerosis (ALS) has been associated with reduced levels of stress and improved quality of life. Moreover, it may reduce the difficulty of traveling to perform physical or other self-care activities. Thus, this study designed a clinical trial protocol to investigate the effects of a self-care education program via telerehabilitation on the burden and quality of life of caregivers of individuals with ALS. Methods: This single-blinded randomized clinical trial will recruit 26 caregivers and randomly allocate them to the experimental (EG = 13) or control group (CG = 13). The EG will receive an informative booklet and participate in a 6-week synchronous telerehabilitation program with a neuropsychologist, nutritionist, and physiotherapist to discuss physical and mental health. The CG will receive an informative booklet on self-care and physical activity and weekly phone calls for 6 weeks to solve questions about the booklet. Outcomes will include the caregiver burden (Zarit scale), quality of life (World Health Organization Quality of Life BREF), pain (McGill Pain Questionnaire), stress (Perceived Stress Scale), and depression (Beck Depression Inventory), which will be evaluated at the baseline after the six-week program and 30 days after the program. Additionally, we will assess daily the nocturnal awakenings, sleep patterns, level of physical activity, and heart rate variability. Discussion: This study aimed to investigate the effectiveness of telerehabilitation for caregivers of individuals with ALS. If effective, this program could be disseminated among health professionals, increasing the possibility of remotely monitoring individuals with difficulty performing physical activities. Trial registration number: NCT05884034 (clinicaltrials.gov).