Blockchain-Based Innovations for Population-Based Registries for Rare Neurodegenerative Diseases

Rare diseases are difficult if not impossible to study outside of population-based registries. Particularly in the context of rare neurodegenerative diseases characterized by case heterogeneity, difficult differential diagnosis by specialists, and small numbers of patients, registries make otherwise unfeasible incidence studies cost-effective and manageable. Building up and maintaining such registries is challenging and requires strong, active, and collaborative networks. Centralization around a leading institution provides structure and consistency, but this single-site storage leads to inefficiency and bottlenecks and is prone to failures, attacks, and manipulation. Furthermore, a substantial amount of trust is required between parties sharing data in a traditional registry. Patients are increasingly reluctant to share data in light of regular news reports about healthcare data breaches. Underfunded rare disease specialized centers are also hesitant to exchange with the leading institution out of fear that the low numbers of patients may seek treatment elsewhere. A lack of electronic health records and information system interoperability in certain settings leads to information silos and only further exacerbate the other issues. Blockchain technology may provide unique, innovative solutions to many of these challenges. Specifically, through digital trust and the use of an immutable distributed ledger, automated data transaction processing, guaranteed integrity, and enhanced security, blockchain technology seems to be perfectly suitable to optimize current population-based rare neurodegenerative disease registry construction and maintenance

Investigation of the reshaping process by hydroforming using magnetorheological fluids

The reshaping of End-of-Life (EoL) components is considered a promising approach to put in practice one of the virtuous strategies of the Circular Economy. The heterogeneity in a EoL part, the alternation of deformed/undeformed regions resulting from the manufacturing process, may hinder an effective reshaping into a brand new geometry. Therefore, the proper selection among the sheet metal forming processes to overcome such a limitation is of utmost importance. The present work, based on a full numerical approach, investigates the reshaping process of a discshaped EoL by hydroforming using a Magneto Rheological Fluid (MRF) as the forming medium. The basic idea is to combine the advantages coming from the flexibility of the hydroforming process with those from the MRF whose behavior (i.e. its viscosity affecting the shear stresses at the contact with the blank) can be tailored by adjusting the applied magnetic field. The reshaping approach is investigated according to two separate routes, differentiated by a different target geometry. A factorial plan of numerical simulations allowed to investigate the effect of the MRF behaviour as well as the geometry of the EoL component on the quality of the reshaped part, expressed in terms of accuracy in the final shape and thickness distributio

Optimization of the sheet hydroforming process parameters to improve the quality of reshaped EoL components

The reshaping of End-of-Life (EoL) components by means of sheet metal forming process has been considered largely attractive, even from the social and economic point of view. At the same time, EoL parts can be often characterized by non-uniform thicknesses or alternation of work-hardened/undeformed zones as the results of the manufacturing process. Such heterogeneity can hinder a proper reshaping of the EoL part and residual marks on the re-formed blanks can be still present at the end of the reshaping step. In a previous analysis, the authors evaluated the effectiveness of reshaping a blank with a deep drawn feature by means of the Sheet Hydroforming (SHF) process: it was demonstrated that residual marks were still present if the deep drawn feature was located in a region not enough strained during the reshaping step. Starting from this condition and adopting a numerical approach, additional investigations were carried out changing the profile of the load applied by the blankholder and the maximum oil pressure. Numerical results were collected in terms of overall strain severity and residual height of the residual marks from the deep drawn feature at the end of the reshaping step. Data were then fitted by accurate Response Surfaces trained by means of interpolant Radial Basis Functions, subsequently used to carry out a virtual optimization managed by a multi-objective genetic algorithm. Optimization results suggested the optimal value of the output variables to reduce the marks from the deep drawn feature without the occurrence of rupture

Blockchain-Based Innovations for Population-Based Registries for Rare Neurodegenerative Diseases

Rare diseases are difficult if not impossible to study outside of population-based registries. Particularly in the context of rare neurodegenerative diseases characterized by case heterogeneity, difficult differential diagnosis by specialists, and small numbers of patients, registries make otherwise unfeasible incidence studies cost-effective and manageable. Building up and maintaining such registries is challenging and requires strong, active, and collaborative networks. Centralization around a leading institution provides structure and consistency, but this single-site storage leads to inefficiency and bottlenecks and is prone to failures, attacks, and manipulation. Furthermore, a substantial amount of trust is required between parties sharing data in a traditional registry. Patients are increasingly reluctant to share data in light of regular news reports about healthcare data breaches. Underfunded rare disease specialized centers are also hesitant to exchange with the leading institution out of fear that the low numbers of patients may seek treatment elsewhere. A lack of electronic health records and information system interoperability in certain settings leads to information silos and only further exacerbate the other issues. Blockchain technology may provide unique, innovative solutions to many of these challenges. Specifically, through digital trust and the use of an immutable distributed ledger, automated data transaction processing, guaranteed integrity, and enhanced security, blockchain technology seems to be perfectly suitable to optimize current population-based rare neurodegenerative disease registry construction and maintenance

A para-religious setting for financial exploitation of the mentally incapacitated: when the habit doesn’t make a monk

Exploitation and circumvention of the mentally incapacitated is a criminal offence listed in the Italian penal code (Penal Code Art. 643). It involves the exploitation and circumvention of people who are fragile and vulnerable owing to their health conditions and/or mental status, and fits into the grey area between such subjects’ freedom to make decisions about their physical conditions and economic assets, and the abuse of their trust perpetrated by third parties for personal gain. The authors describe a case of financial exploitation and circumvention of a married couple that is remarkable in view of both the huge sums extorted from the victims and the duration of the peculiar illicit activities (that lasted more than 10 years). These were perpetrated by a charismatic figure leading a “para-religious” group. He claimed to be a prophet, but his private life was highly questionable. The method of ascertainment used to verify the victims’ mentally incapacitated state is described, analyzed and commented; the diagnosis could not be deferred in view of the characteristics of the prolonged penal offences committe

Long-term outcome of subthalamic nucleus DBS in Parkinson's disease: from the advanced phase towards the late stage of the disease?

Deep Brain Stimulation of the Subthalamic Nucleus (STN-DBS) is an effective treatment for Parkinson's disease (PD), but only few studies investigated its long-term efficacy. Furthermore, little is known about the role of PD-subtype on STN-DBS long-term outcome

Public perspectives on protective measures during the COVID-19 pandemic in the Netherlands, Germany and Italy: A survey study

Background: The extent to which people implement government-issued protective measures is critical in preventing further spread of coronavirus disease 2019 (COVID-19) caused by coronavirus SARS-CoV-2. Our study aimed to describe the public belief in the effectiveness of protective measures, the reported implementation of these measures, and to identify communication channels used to acquire information on COVID-19 in European countries during the early stage of the pandemic. Methods and findings: An online survey available in multiple languages was disseminated starting on March 19th, 2020. After five days, we computed descriptive statistics for countries with more than 500 respondents. Each day, we assessed enacted community containment measures by stage of stringency (I-IV). In total, 9,796 adults responded, of whom 8,611 resided in the Netherlands (stage III), 604 in Germany (stage III), and 581 in Italy (stage IV). To explore possible dynamics as containment strategies intensified, we also included 1,365 responses submitted during the following week. Participants indicated support for governmental measures related to avoiding social gatherings, selective closure of public places, and hand hygiene and respiratory measures (range for all measures: 95.0%-99.7%). Respondents from the Netherlands less frequently considered a complete social lockdown effective (59.2%), compared to respondents in Germany (76.6%) or Italy (87.2%). Italian residents applied enforced social distancing measures more frequently (range: 90.2%-99.3%, German and Dutch residents: 67.5%-97.0%) and self-initiated hygienic and social distancing behaviors (range: 36.3%-96.6%, German and Dutch residents: 28.3%-95.7%). Respondents reported being sufficiently informed about the outbreak and behaviors to avoid infection (range: 90.2%-91.1%). Information channels most commonly reported included television newspapers, official health websites, and social media. One week later, we observed no major differences in submitted responses. Conclusions: During the early stage of the COVID-19 pandemic, belief in the effectiveness of protective measures among survey respondents from three European countries was high and participants reported feeling sufficiently informed. In March 2020, implementation of measures differed between countries and were highest among respondents from Italy, who were subjected to the most stringent lockdown measures and greatest COVID-19 burden in Europe during this period

Giving Researchers a Headache - Sex and Gender Differences in Migraine

Migraine is a common neurovascular disorder affecting ∼15% of the general population. Ranking second in the list of years lived with disability (YLD), people living with migraine are greatly impacted by this especially burdensome primary headache disorder. In ∼30% o

The Effect of Socioeconomic Factors and Indoor Residual Spraying on Malaria in Mangaluru, India: A Case-Control Study

India faces 0.5 million malaria cases annually, including half of all Plasmodium vivax malaria cases worldwide. This case–control study assessed socioeconomic determinants of urban malaria in coastal Mangaluru, Karnataka, southwestern India. Between June and December 2015, we recruited 859 malaria patients presenting at the governmental Wenlock Hospital and 2190 asymptomatic community controls. We assessed clinical, parasitological, and socioeconomic data. Among patients, p. vivax mono-infection (70.1%) predominated. Most patients were male (93%), adult (median, 27 years), had no or low-level education (70.3%), and 57.1% were daily labourers or construction workers. In controls (59.3% male; median age, 32 years; no/low-level education, 54.5%; daily labourers/construction workers, 41.3%), 4.1% showed asymptomatic Plasmodium infection. The odds of malaria was reduced among those who had completed 10th school grade (aOR, 0.3; 95% CI, 0.26–0.42), lived in a building with a tiled roof (aOR, 0.71; 95% CI, 0.53–0.95), and reported recent indoor residual spraying (aOR, 0.02; 95% CI, 0.01–0.04). In contrast, migrant status was a risk factor for malaria (aOR, 2.43; 95% CI, 1.60–3.67). Malaria in Mangaluru is influenced by education, housing condition, and migration. Indoor residual spraying greatly contributes to reducing malaria in this community and should be promoted, especially among its marginalised members.Peer Reviewe