A Smartphone-based Application for Self-Management in Multiple Sclerosis

Background. Multiple sclerosis (MS) is a chronic inflammation of the central nervous system and self-management is necessary for MS patients. The purpose of the present study was to develop a smartphone-based application for self-management in multiple sclerosis. Methods. This research was conducted in two phases. In the first phase, users’ requirements were investigated by using a questionnaire. The participants were 120 MS patients and six neurologists. In the second phase, a prototype of the application was designed and its usability was evaluated by using QUIS questionnaire. Results. Most of the proposed educational content, data elements, and the application functions, such as medication time reminder, assessing the severity of fatigue, and calculating the score of the Fatigue Severity Scale were found necessary to be included in the application. Finally, the usability of the application was evaluated by the users and the average of mean values was 7.6 out of 9 which indicated a “good” level of user satisfaction. Conclusions. The application designed in this study was able to collect patient data and facilitated consulting physicians at the point of need. It is expected that the patients’ quality of life and health status can be improved by using this application. However, more research is required to investigate the efficiency and effectiveness of this application in terms of reducing the number of visits to the medical centers, improving self-management skills of MS patients and their quality of life.

Smart-Contract Aware Ethereum and Client-Fog-Cloud Healthcare System

The Internet of Medical Things (IoMT) is increasingly being used for healthcare purposes. IoMT enables many sensors to collect patient data from various locations and send it to a distributed hospital for further study. IoMT provides patients with a variety of paid programmes to help them keep track of their health problems. However, the current system services are expensive, and offloaded data in the healthcare network are insecure. The research develops a new, cost-effective and stable IoMT framework based on a blockchain-enabled fog cloud. The study aims to reduce the cost of healthcare application services as they are processing in the system. The study devises an IoMT system based on different algorithm techniques, such as Blockchain-Enable Smart-Contract Cost-Efficient Scheduling Algorithm Framework (BECSAF) schemes. Smart-Contract Blockchain schemes ensure data consistency and validation with symmetric cryptography. However, due to the different workflow tasks scheduled on other nodes, the heterogeneous, earliest finish, time-based scheduling deals with execution under their deadlines. Simulation results show that the proposed algorithm schemes outperform all existing baseline approaches in terms of the implementation of applications.

U-IMD: the first Unified European registry for inherited metabolic diseases

Background Following the broad application of new analytical methods, more and more pathophysiological processes in previously unknown diseases have been elucidated. The spectrum of clinical presentation of rare inherited metabolic diseases (IMDs) is broad and ranges from single organ involvement to multisystemic diseases. With the aim of overcoming the limited knowledge about the natural course, current diagnostic and therapeutic approaches, the project has established the first unified patient registry for IMDs that fully meets the requirements of the European Infrastructure for Rare Diseases (ERDRI). Results In collaboration with the European Reference Network for Rare Hereditary Metabolic Disorders (MetabERN), the Unified European registry for Inherited Metabolic Diseases (U-IMD) was established to collect patient data as an observational, non-interventional natural history study. Following the recommendations of the ERDRI the U-IMD registry uses common data elements to define the IMDs, report the clinical phenotype, describe the biochemical markers and to capture the drug treatment. Until today, more than 1100 IMD patients have been registered. Conclusion The U-IMD registry is the first observational, non-interventional patient registry that encompasses all known IMDs. Full semantic interoperability for other registries has been achieved, as demonstrated by the use of a minimum common core data set for equivalent description of metabolic patients in U-IMD and in the patient registry of the European Rare Kidney Disease Reference Network (ERKNet). In conclusion, the U-IMD registry will contribute to a better understanding of the long-term course of IMDs and improved patients care by understanding the natural disease course and by enabling an optimization of diagnostic and therapeutic strategies.

Rapid Project Management in a Time of COVID-19 Crisis: Lessons learned from a Global VIRUS: COVID-19 Registry (Preprint)

UNSTRUCTURED The COVID-19 pandemic emerged globally in a rapid and precipitous manner devastating healthcare organizations worldwide. The progression of the illness, the impact to the vulnerable and best care for the hospitalized patient, is undefined. Incomplete knowledge of best practices by frontline health care providers may result in error-prone care. Data on symptoms and advancement of the SARS-CoV-2 virus leading to critical care admission has not been captured or communicated well between international organizations experiencing the same impact from the virus. As the SARS-CoV-2 virus quickly reached every country, it was recognized that global communication and data collection on the critical care patients admitted with COVID-19 needed to be rapidly put in place. Developing a global registry to collect patient data and treatment in the critical care setting was of utmost priority with the goal to minimize preventable death, disability, and costly complications for patients with COVID-19. Project management around the prompt implementation of the registry is crucial. Valuable information could be lost daily without a format to record data and the opportunity to share significant findings. Putting the VIRUS: COVID-19 Registry in place could change patient outcomes by gaining insight to progression of symptoms and treatments worldwide. This article addresses project management lessons in a time of crises outlining the methodology used and is meant to be a useful tool for other organizations for rapid project management for a large-scale health care data registry.

U-IMD: The first Unified European registry for Inherited Metabolic Diseases

Background: Following the broad application of new analytical methods, more and more pathophysiological processes in previously unknown diseases have been elucidated. The spectrum of clinical presentation of rare inherited metabolic diseases (IMDs) is broad and ranges from single organ involvement to multisystemic diseases. With the aim of overcoming the limited knowledge about the natural course, current diagnostic and therapeutic approaches, the project has established the first unified patient registry for IMDs that fully meets the requirements of the European Infrastructure for Rare Diseases (ERDRI). Results : In collaboration with the European Reference Network for Rare Hereditary Metabolic Disorders (MetabERN), the Unified European registry for Inherited Metabolic Diseases (U-IMD) was established to collect patient data as an observational, non-interventional natural history study. Following the recommendations of the ERDRI the U-IMD registry uses common data elements to define the IMDs, report the clinical phenotype, describe the biochemical markers and to capture the drug treatment. Until today, more than 1100 IMD patients have been registered. Conclusion: The U-IMD registry is the first observational, non-interventional patient registry that encompasses all known IMDs. Full semantic interoperability for other registries has been achieved, as demonstrated by the use of a minimum common core data set for equivalent description of metabolic patients in U-IMD and in the patient registry of the European Rare Kidney Disease Reference Network (ERKNet). In conclusion, the U-IMD registry will contribute to a better understanding of the long-term course of IMDs and improved patients care by understanding the natural disease course and by enabling an optimization of diagnostic and therapeutic strategies.

U-IMD: The first Unified European registry for Inherited Metabolic Diseases

Background: Following the broad application of new analytical methods, more and more pathophysiological processes in previously unknown diseases have been elucidated. The spectrum of clinical presentation of rare inherited metabolic diseases (IMDs) is broad and ranges from single organ involvement to multisystemic diseases. With the aim of overcoming the limited knowledge about the natural course, current diagnostic and therapeutic approaches, the project has established the first unified patient registry for IMDs that fully meets the requirements of the European Infrastructure for Rare Diseases (ERDRI). Results: In collaboration with the European Reference Network for Rare Hereditary Metabolic Disorders (MetabERN), the Unified European registry for Inherited Metabolic Diseases (U-IMD) was established to collect patient data as an observational, non-interventional natural history study. Following the recommendations of the ERDRI the U-IMD registry uses common data elements to define the IMDs, report the clinical phenotype, describe the biochemical markers and to capture the drug treatment. Until today, more than 1100 IMD patients have been registered.Conclusion: The U-IMD registry is the first observational, non-interventional patient registry that encompasses all known IMDs. Full semantic interoperability for other registries has been achieved, as demonstrated by the use of a minimum common core data set for equivalent description of metabolic patients in U-IMD and in the patient registry of the European Rare Kidney Disease Reference Network (ERKNet). In conclusion, the U-IMD registry will contribute to a better understanding of the long-term course of IMDs and improved patients care by understanding the natural disease course and by enabling an optimization of diagnostic and therapeutic strategies.

Experiences of an HCV Patient engagement group: a seven-year journey

Historically, few publications exist where patient engagement in clinical studies is a driving force in study design and implementation. The Patient Centered Outcomes Research Institute (PCORI), established in 2010, employed a new model of integrating stakeholder perspectives into healthcare research. This manuscript aims to share the experience of a Patient Engagement Group (PEG) that has engaged in hepatitis C (HCV) clinical research alongside investigators conducting two studies funded by PCORI and to inspire others to get more involved in research that can impact our healthcare and health policies.There are many gaps in treating infectious diseases. Traditionally, treatment and research have been strictly clinical/medical approaches with little focus on the biopsychosocial aspects of individual patients. Our PEG reflected on its own personal experiences regarding how research design can affect study implementation by including patients who are normally excluded. We considered barriers to treatment, out of pocket costs, access to insurance, and patient race/ethnicity. Common themes were discovered, and four major topics were discussed. In addition, measures used in the two studies to collect patient data were considered, tested, and implemented by the group.We describe in detail how we were formed and how we have worked together with researchers on two PCORI funded projects over the past 7 years. We formulated and implemented guidelines and responsibilities for operating as a PEG as well as appointing a chair, co-chair, and primary author of this manuscript.Written from the perspective of a PEG whose members experienced HCV treatment and cure, we provide lessons learned, and implications for further research to include patients. PEGs like ours who are included as active partners in research can provide useful input to many areas including how patients are treated during clinical trials, how they interact with research teams, and how the clinical benefits of drugs or devices are defined and evaluated. PCORI believes engagement impacts research to be more patient-centered, useful, and trustworthy, and will ultimately lead to greater use and interest of research results by the patient and the broader healthcare community.

U-IMD: The First Unified European Registry for Inherited Metabolic Diseases

Background: Following the broad application of new analytical methods, more and more pathophysiological processes in previously unknown diseases have been elucidated. The spectrum of clinical presentation of rare inherited metabolic diseases (IMDs) is broad and ranges from single organ involvement to multisystemic diseases. With the aim of overcoming the limited knowledge about the natural course, current diagnostic and therapeutic approaches, the project has established the first unified patient registry for IMDs that fully meets the requirements of the European Infrastructure for Rare Diseases (ERDRI). Results: In collaboration with the European Reference Network for Rare Hereditary Metabolic Disorders (MetabERN), the Unified European registry for Inherited Metabolic Diseases (U-IMD) was established to collect patient data as an observational, non-interventional natural history study. Following the recommendations of the ERDRI the U-IMD registry uses common data elements to define the IMDs, report the clinical phenotype, describe the biochemical markers and to capture the drug treatment. Until today, more than 1100 IMD patients have been registered.Conclusion: The U-IMD registry is the first observational, non-interventional patient registry that encompasses all known IMDs. Full semantic interoperability for other registries has been achieved, as demonstrated by the use of a minimum common core data set for equivalent description of metabolic patients in U-IMD and in the patient registry of the European Rare Kidney Disease Reference Network (ERKNet). In conclusion, the U-IMD registry will contribute to a better understanding of the long-term course of IMDs and improved patients care by understanding the natural disease course and by enabling an optimization of diagnostic and therapeutic strategies.

QoS-Enabled Improved Cuckoo Search-Inspired Protocol (ICSIP) for IoT-Based Healthcare Applications

Internet of Things (IoT) is a technology which accommodates the hardware, software, and physical objects that collaborate with each other. IoT-based healthcare applications are increasing day by day and are never going to be decreased. Healthcare applications work in an ad-hoc manner to collect patient data and send it to corresponding persons so they can take just-in-time action. The routing protocols designed for general ad-hoc networks and applications are not supported by IoT-based, ad-hoc networks. Hence, there exists a need to develop a routing protocol to support IoT-based, ad-hoc networks. This chapter focuses to develop a routing protocol for an IoT-based, cognitive radio ad-hoc network by utilizing bio-inspired concept with the objective of reducing the delay and energy consumption. NS2 simulation results reflect the proposed routing protocol's performance in terms of benchmark performance metrics.

PO 18118 - Epidemiological study of ankle fractures

Introduction: Ankle fractures account for 10% of all fractures and rank second in frequency among lower limb fractures, behind only hip fractures. The lack of studies on the epidemiology of ankle fractures available in the Brazilian literature motivated a more in-depth study to better describe these fractures. The objective of this study was to analyze the epidemiological characteristics of ankle fractures. Methods: An epidemiological, prospective, descriptive, observational study of ankle fractures in a convenience sample taken from the study hospital. In total, 150 patients were evaluated from March 2016 to March 2017. A questionnaire was prepared to collect patient data and variables for subsequent analysis. The following parameters were analyzed: age, occupation, sex, ethnicity, marital status, education, emergency transport, time of trauma, day of the week of trauma, trauma mechanism, fracture type, affected limb, classification, treatment, associated injury and length of hospital stay. Results: Among the patients with ankle fractures, 33.66% of the fractures occurred in the afternoon. A total of 61.34% of the ankle fracture patients were men, and the right was the most commonly affected side. The mean age was 40.48 years. The most frequent trauma mechanism was fall from height, which accounted for 51.42% of fractures. Weber type B fractures were the most frequent type. Conclusion: Ankle fractures treated at the Department of Orthopedics and Traumatology during the study period primarily affected married, Caucasian patients aged between 40 and 50 years with up to a primary education level; fractures were most frequently on the right side and primarily occurred in the afternoon and on Sundays. Sprain due to fall from height was the most common trauma mechanism, and exposed fracture occurred in 28% of the cases.