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In Chapter 7, the objectification of humanity, resulting in the cataloging of humans through the means of science and technology, is addressed through the example of US sex offender registries and other criminal databanks. Human cataloging offers government a means to control society in the name of public order, but law reform offers feasible methods of resisting the encroachment on rights of privacy and liberty.
To evaluate the publication efficiency of registered cochlear implant (CI) trials and characterise evolving research trends following the 2022 update.
Methods
This study queried ClinicalTrials.gov to assess publication rates for trials completed before October 2022 and characterise research trends for subsequent registrations. Publication status was ascertained via PubMed and Google Scholar, and trial characteristics were analysed to identify predictors.
Results
Among 98 completed trials, only 26.5% were published. Publication was lowest for industry-sponsored (20.6%) and device trials (20.9%). Interventional design and larger enrolment showed positive but non-significant associations. Post-2022 registrations signalled diversification: device trials decreased (43.9% to 31.9%), while rehabilitation (13.3% to 20.3%) and procedural refinements (11.2% to 17.4%) expanded.
Conclusion
A marked gap persists in CI evidence dissemination, with only one-quarter of trials published. While device studies remain prominent, recent trends reflect a broadening research agenda with increasing emphasis on rehabilitation and surgical techniques, warranting continued monitoring.
This chapter defines the different terms “miscarriage of justice,” “wrongful convictions” and “proven innocence.” Although these terms are often used interchangeably with differences ascribed to customs and semantics, there are critical differences between them. Miscarriages of justice is the broadest term. In some definitions, it can include any violation of rights. In the criminal context, miscarriages of justice can include unfair trials and unwarranted pre-trial detentions. A wrongful conviction is a narrower term that requires a conviction that is subsequently overturned. As measured in recently developed registries, wrongful convictions are convictions overturned on the basis of new evidence relevant to guilt or innocence. Finally, the narrowest term is proven innocence. This approach is most popular in the United States, where it is also called factual or actual innocence. It was pioneered by Edwin Borchard and used by innocence projects. Formalistic arguments that proven innocence does not violate the presumption of innocence are critiqued. Consistent with Guido Calabresi’s and Phillip Bobbitt’s tragic choice theory, the use of the different terms differs over time and place, and they are used to ration justice.
Obtaining complete and accurate information in recruitment registries is essential for matching potential participants to research studies for which they qualify. Since electronic health record (EHR) systems are required to make patient data available to external systems, an interface between EHRs and recruitment registries may improve accuracy and completeness of volunteers’ profiles. We tested this hypothesis on ResearchMatch (RM), a disease- and institution-neutral recruitment registry with 1357 studies across 255 institutions.
Methods:
We developed an interface where volunteers signing up for RM can authorize transfer of demographic data, medical conditions, and medications from the EHR into a registration form. We obtained feedback from a panel of community members to determine acceptability of the planned integration. We then developed the EHR interface and performed an evaluation study of 100 patients to determine whether RM profiles generated with EHR-assisted adjudication included more conditions and medications than those without the EHR connection.
Results:
Community member feedback revealed that members of the public were willing to authenticate into the EHR from RM with proper messaging about choice and privacy. The evaluation study showed that out of 100 participants, 75 included more conditions and 69 included more medications in RM profiles completed with the EHR connection than those without. Participants also completed the EHR-connected profiles in 16 fewer seconds than non-EHR-connected profiles.
Conclusions:
The EHR to RM integration could lead to more complete profiles, less participant burden, and better study matches for many of the over 148,000 volunteers who participate in ResearchMatch.
To examine predictors of suicidal behavior (SB) in adults aged 75 years and above with dementia.
Design:
Longitudinal national register-based study.
Participants and setting:
Swedish residents aged ≥75 years with dementia identified in the Swedish Dementia Registry (SveDem) between 1 January 2007 and 31 December 2017 (N = 59 042) and followed until 31 December 2018. Data were linked with numerous national registers using personal identity numbers.
Measurements:
Outcomes were nonfatal self-harm and suicide. Fine and Gray regression models were used to investigate demographics, comorbidities, and psychoactive medications associated with fatal and nonfatal SB.
Results:
Suicidal behavior was observed in 160 persons after dementia diagnosis; 29 of these died by suicide. Adjusted sub-hazard ratio (aSHRs) for SB was increased in those who had a previous episode of self-harm (aSHR = 14.42; 95% confidence interval [CI] = 7.06–29.46), those with serious depression (aSHR = 4.33, 95%CI = 2.94–6.4), and in those born outside Sweden (aSHR = 1.53; 95% CI = 1.03–2.27). Use of hypnotics or anxiolytics was also associated with a higher risk of SB; use of antidepressants was not. Milder dementia and higher frailty score also increased risk of SB. Risk was decreased in those who received home care (aSHR = 0.52; 95%CI = 0.38–0.71) and in the oldest group (aSHR = 0.35; 95%CI = 0.25–0.49).
Conclusion:
In addition to established targets for suicidal behavior prevention (improved identification and treatment of depression and previous self-harm), several new risk factors were suggested. There is a need for innovative public health strategies to meet the needs of older dementia patients with a foreign background. Home care may have a potential positive effect to prevent SB in people with dementia, but this needs to be further explored.
This chapter describes different ways to identify outcome measures once the outcomes that matter most are identified. These outcome measures can be used to see if outcomes are improving or not. The chapter also gives an example of how to organize chosen outcome measures using the Capability, Comfort, and Calm framework. Guiding principles for narrowing an outcome measure set to a small set of actionable measures are outlined.
This chapter starts to analyse the institutional frameworks of different international courts and tribunals in comparative perspective. More importantly, it introduces the invisible army of legal bureaucrats (clerks, registry and secretariat officials, and arbitral secretaries) who assist international adjudicators in their daily duties. The story focuses on their backgrounds, their modes of recruitment and promotion, their relationship with the judges and arbitrators they are called to serve, and the ambiguities inherent in that relationship. From here onwards, the role of bureaucrats in the judicial process will come into sharper relief. Their duties typically include: summarizing the parties’ arguments for the benefit of the adjudicators, conducting legal and factual research on the disputed issues, circulating internal memoranda that suggest options on how to solve the case, assisting in the preparation of oral questions for hearings, attending deliberations, and drafting the final judgments or awards.
This book offers a unique insight into the inner workings of international courts and tribunals. Combining the rigour of the essay and the creativity of the novel, Tommaso Soave narrates the invisible practices and interactions that make up the dispute settlement process, from the filing of the initial complaint to the issuance of the final decision. At each step, the book unravels the myriad activities of the legal experts running the international judiciary – judges, arbitrators, agents, counsel, advisors, bureaucrats, and specialized academics – and reveals their pervasive power in the process. The cooperation and competition among these inner circles of professionals lie at the heart of international judicial decisions. By shedding light on these social dynamics, Soave takes the reader on a journey through the lives, ambitions, and preoccupations of the everyday makers of international law.
It remains unclear how SSRIs and other antidepressants are associated with the risk of repeated suicide attempts. We aimed to analyse the association between redeemed antidepressant prescriptions and the risk of repeated suicide attempts, hypothesising that antidepressant treatment is associated with increased risk of repeated suicide attempts.
Methods
The study was based on Danish register data and a validated cohort of 1842 suicide attempts. We used three Cox regression models (crude, adjusted and propensity score matched) to analyse the data; these models included both static and dynamic time-dependent factors.
Results
1842 individuals attempted suicide in the study period, with a total of 210 repeated attempts. Individuals redeeming antidepressant prescriptions were more likely to repeat a suicide attempt. All crude models showed all antidepressants to be significant risk factors (HR around 1.39), whereas all adjusted models showed all antidepressants to be insignificant risk factors.
Conclusion
We found no significant increased risk of repeated suicide attempts in individuals redeeming a prescription for any antidepressant (or only SSRIs) when considering the individuals' baseline risk of repetition. This study is based on validated suicide attempts, register data, and strong epidemiology designs, but it still has some limitations, and the results should be replicated and confirmed in other studies.
Securing the airway is a crucial stage of trauma care. Cricothyroidotomy (CRIC) is often addressed as a salvage procedure in complicated cases or following a failed endotracheal intubation (ETI). Nevertheless, it is a very important skill in prehospital settings, such as on the battlefield.
Hypothesis/Problem:
This study aimed to review the Israel Defense Forces (IDF) experience with CRIC over the past two decades.
Methods:
The IDF Trauma Registry (IDF-TR) holds data on all trauma casualties (civilian and military) cared for by military medical teams since 1997. Data of all casualties treated by IDF from 1998 through 2018 were extracted and analyzed to identify all patients who underwent CRIC procedures.
Variables describing the incident scenario, patient’s characteristics, injury pattern, treatment, and outcome were extracted. The success rate of the procedure was described, and selected variables were further analyzed and compared using the Fisher’s-exact test to identify their effect on the success and failure rates. Odds Ratio (OR) was further calculated for the effect of different body part involvement on success and for the mortality after failed ETI.
Results:
One hundred fifty-three casualties on which a CRIC attempt was made were identified from the IDF-TR records. The overall success rate of CRIC was reported at 88%. In patients who underwent one or two attempts, the success rate was 86%. No difference was found across providers (physician versus paramedic). The CRIC success rates for casualties with and without head trauma were 80% and 92%, respectively (P = .06). Overall mortality was 33%.
Conclusions:
This study shows that CRIC is of merit in airway management as it has shown to have consistently high success rates throughout different levels of training, injuries, and previous attempts with ETI. Care providers should be encouraged to retain and develop this skill as part of their tool box.
Chapter 1 recounts the historical evolution of sex offender registration and notification (SORN) laws in the US. Registration laws originated in the 1930s, first in municipalities in the Los Angeles area, and later several states, typically targeting individuals with criminal convictions more generally. Over time, interest in registration flagged, but experienced a major resurgence in the early 1990s, when states, acting in the wake of high-profile sexual victimizations of children, quickly enacted new laws, this time targeting convicted sex offenders in particular. The new-era laws were not only more expansive and onerous than their antecedents, they differed in a critically important respect: For the first time, the information they contained concerning individuals was made publicly available, in the name of community self-protection. SORN laws have since continued to expand, in significant part due to pressure from the federal government, and today are in effect nationwide affecting the lives of hundreds of thousands of individuals.
The prevalence of congenital heart disease (CHD) in adults is rising necessitating a greater understanding of acquired diseases such as community-acquired pneumonia, which remains a leading cause of age-related mortality and morbidity in the general population. We hypothesise that the CHD population, given cardiopulmonary mechanics and altered immune function, bears a uniquely high risk for pneumonia-related hospitalisations and mortality.
Methods:
A countrywide cohort study was performed to calculate the relative risk and cumulative incidence of pneumonia hospitalisations and resultant 30-day mortality amongst the adult CHD population, matched 1:10 with non-CHD persons by gender, age, and adjusted for comorbidities. Cox proportional hazard regression quantified the impact of CHD severity and extracardiac defects.
Results:
The CHD cohort includes 17,162 adults. The majority demonstrate mild/moderate CHD complexity. The cumulative incidence of pneumonia hospitalisation was higher for adults with CHD (hazard ratio 1.90; 95% confidence interval: 1.74–2.06) than the comparison cohort. This risk was increased for those with extracardiac defects or a syndrome (hazard ratio: 4.34; 95% confidence interval: 3.39–5.54). Additionally, CHD individuals with severe/univentricular subtypes demonstrate a heightened risk compared to the non-CHD cohort (hazard ratio: 2.35; 95% confidence interval: 1.94–2.84), as well as compared to those with mild/moderate CHD (hazard ratio: 1.28; 95% confidence interval: 1.07–1.53). In addition, pneumonia hospitalisation mortality was elevated above the comparison population with a 30-day mortality rate ratio of 1.31 (95% confidence interval: 1.00–1.73).
Conclusion:
Adults with CHD are at elevated risk of pneumonia hospitalisations and pneumonia-associated mortality. This risk is further elevated in those with severe CHD and extracardiac defects.
Many countries have recently changed to the diagnostic system ICD-10. In Denmark a change from ICD-8 to ICD-10 was carried out in 1994. In the present study it was assessed whether the change in diagnostic system is responsible for a considerable increase in the number of registered drug abusers in the Danish mental hospitals, reported by the National Board of Health in Denmark from 1993 to 1994. Data is extracted from the Danish Psychiatric Case Register, which contains data on all psychiatric admissions in Denmark from 1970 to the present. The results show that it is not possible to follow the development of different kinds of drug abuse from ICD-8 to ICD-10. It is however, possible when setting the right conditions to make longitudinal investigations across the shift from ICD-8 and ICD-10 when estimating the total number of drug diagnoses. It is concluded that comparing data in different diagnostic systems even in different versions of the same system is demanding and that research based on such sources always must be carried out on the basis of a profound evaluation of the selection procedure, the registration principles and the diagnostic system itself. This is recommended not only in the fields of substance abuse but in all studies based on data from different diagnostic systems.
Twin registries have developed as a valuable resource for the study of many aspects of disease and society over the years in many different countries. A number of these registries include large numbers of twins with data collected at varying information levels for twin cohorts over the past several decades. More recent expansion of twin datasets has allowed for the collection of genetic data, together with many other levels of ‘omic’ information along with multiple demographic, physiological, health outcomes and other measures typically used in epidemiologic research. Other twin data sources outside these registries reflect research interests in particular aspects of disease or specific phenotypic assessment. Twin registries have the potential to play a key role in many aspects of the artificial intelligence/machine learning-driven projects of the future and will continue to keep adapting to the changing research landscape.
The relationship between the genetic and environmental risk factors for alcohol use disorders (AUD) detected in Swedish medical, pharmacy, and criminal registries has not been hitherto examined. Prior twin studies have varied with regard to the detection of shared environmental effects and sex differences in the etiology of AUD. In this report, structural equation modeling in OpenMx was applied to (1) the three types of alcohol registration in a population-based sample of male–male twins and reared-together full and half siblings (total 208,810 pairs), and (2) AUD, as a single diagnosis, in male–male, female–female, and opposite-sex (OS) twins and reared-together full and half siblings (total 787,916 pairs). An independent pathway model fit best to the three forms of registration and indicated that between 70% and 92% of the genetic and 63% and 98% of the shared environmental effects were shared in common with the remainder unique to each form of AUD registration. Criminal registration had the largest proportion of unique genetic and environmental factors. The best fit model for AUD estimated the heritability to be 22% and 57%, respectively, in females and males. Both shared (12% vs. 6%) and special twin environment (29% vs. 2%) were substantially more important in females versus males. In conclusion, AUD ascertained from medical, pharmacy, and criminal Swedish registries largely share the same genetic and environmental risk factors. Large sex differences in the etiology of AUD were seen in this sample, with substantially stronger familial environmental and weaker genetic effects in females versus males.
Background: Transient ischemic attack (TIA) and minor stroke are associated witha substantial risk of subsequent stroke; however, there is uncertainty aboutwhether such patients require admission to hospital for their initialmanagement. We used data from a clinical stroke registry to determine thefrequency and predictors of hospitalization for TIA or minor stroke acrossthe province of Ontario, Canada. Methods: The Ontario Stroke Registry collects information on apopulation-based sample of all patients seen in the emergency departmentwith acute stroke or TIA in Ontario. We identified patients with minorischemic stroke or TIA included in the registry between April 1, 2008, andMarch 31, 2011, and used multivariable analyses to evaluate predictors ofhospitalization. Results: Our study sample included 8540 patients with minor ischemic strokeor TIA, 47.2% of whom were admitted to hospital, with a range of 37.6% to70.3% across Ontario’s 14 local health integration network regions. Keypredictors of admission were preadmission disability, vascular risk factors,presentation with weakness, speech disturbance or prolonged/persistentsymptoms, arrival by ambulance, and presentation on a weekend or duringperiods of emergency department overcrowding. Conclusions: More than one-half of patients with minor stroke or TIA were notadmitted to the hospital, and there were wide regional variations inadmission patterns. Additional work is needed to provide guidance to healthcare workers around when to admit such patients and to determine whetherdischarged patients are receiving appropriate follow-up care.
The 11th of March 2011, a magnitude 9.0 earthquake struck alongside the north-east coast of Honshu Island, Japan, causing a tsunami and a major nuclear accident. The French Institute for Public Health Surveillance (InVS) set up, within one week after the triple catastrophe, an Internet-based registry for French nationals who were in Japan at the time of the disasters. In this string of disasters, in this context of uncertainties about the nuclear risks, the aim of this registry was to facilitate the: (1) realization of further epidemiologic studies, if needed; and (2) contact of people if a medical follow-up was needed. The purpose of this report was to describe how the health registry was set up, what it was used for, and to discuss further utilization and improvements to health registries after disasters.
Methods
The conception of the questionnaire to register French nationals was based on a form developed as part of the Steering Committee for the management of the post-accident phase in the event of nuclear accident or a radiological emergency situation (CODIRPA) work. The questionnaire was available online.
Results
The main objective was achieved since it was theoretically possible to contact again the 1,089 persons who completed the form. According to the data collected on their space-time budget, to the result of internal contamination measured by the French Institute for Radiological Protection and Nuclear Safety (IRSN) and dosimetric expertise published by the World Health Organization (WHO), it was not suitable to conduct an epidemiologic follow-up of adverse effects of exposure to ionizing radiations among them. However, this registry was used to launch a qualitative study on exposure to stress and psychosocial impact of the Great East Japan Earthquake on French nationals who were in Japan in March 2011.
Conclusion
Setting a registry after a disaster is a very important step in managing the various consequences of a disaster. This experience showed that it is quickly feasible and does not raise adverse side effects in involved people.
MotreffY , PirardP , LagréeC , RoudierC , Empereur-BissonnetP . Voluntary Health Registry of French Nationals after the Great East Japan Earthquake, Tsunami, and Fukushima Daiichi Nuclear Power Plant Accident: Methods, Results, Implications, and Feedback. Prehosp Disaster Med.2016;31(3):326–329.