Parental factors associated with the decision to participate in a neonatal clinical trial

Importance: It remains poorly understood how parents decide whether to enroll a child in a neonatal clinical trial. This is particularly true for parents from racial or ethnic minority populations. Understanding factors associated with enrollment decisions may improve recruitment processes for families, increase enrollment rates, and decrease disparities in research participation. Objective: To assess differences in parental factors between parents who enrolled their infant and those who declined enrollment for a neonatal randomized clinical trial. Design, Setting, and Participants: This survey study conducted from July 2017 to October 2019 in 12 US level 3 and 4 neonatal intensive care units included parents of infants who enrolled in the High-dose Erythropoietin for Asphyxia and Encephalopathy (HEAL) trial or who were eligible but declined enrollment. Data were analyzed October 2019 through July 2020. Exposure: Parental choice of enrollment in neonatal clinical trial. Main Outcomes and Measures: Percentages and odds ratios (ORs) of parent participation as categorized by demographic characteristics, self-assessment of child\u27s medical condition, study comprehension, and trust in medical researchers. Survey questions were based on the hypothesis that parents who enrolled their infant in HEAL differ from those who declined enrollment across 4 categories: (1) infant characteristics and parental demographic characteristics, (2) perception of infant\u27s illness, (3) study comprehension, and (4) trust in clinicians and researchers. Results: Of a total 387 eligible parents, 269 (69.5%) completed the survey and were included in analysis. This included 183 of 242 (75.6%) of HEAL-enrolled and 86 of 145 (59.3%) of HEAL-declined parents. Parents who enrolled their infant had lower rates of Medicaid participation (74 [41.1%] vs 47 [55.3%]; P = .04) and higher rates of annual income greater than $55 000 (94 [52.8%] vs 30 [37.5%]; P = .03) compared with those who declined. Black parents had lower enrollment rates compared with White parents (OR, 0.35; 95% CI, 0.17-0.73). Parents who reported their infant\u27s medical condition as more serious had higher enrollment rates (OR, 5.7; 95% CI, 2.0-16.3). Parents who enrolled their infant reported higher trust in medical researchers compared with parents who declined (mean [SD] difference, 5.3 [0.3-10.3]). There was no association between study comprehension and enrollment. Conclusions and Relevance: In this study, the following factors were associated with neonatal clinical trial enrollment: demographic characteristics (ie, race/ethnicity, Medicaid status, and reported income), perception of illness, and trust in medical researchers. Future work to confirm these findings and explore the reasons behind them may lead to strategies for better engaging underrepresented groups in neonatal clinical research to reduce enrollment disparities

Cognitive Radio Networks: Realistic or Not?

A large volume of research has been conducted in the cognitive radio (CR) area the last decade. However, the deployment of a commercial CR network is yet to emerge. A large portion of the existing literature does not build on real world scenarios, hence, neglecting various important interactions of the research with commercial telecommunication networks. For instance, a lot of attention has been paid to spectrum sensing as the front line functionality that needs to be completed in an efficient and accurate manner to enable an opportunistic CR network architecture. This is necessary to detect the existence of spectrum holes without which no other procedure can be fulfilled. However, simply sensing (cooperatively or not) the energy received from a primary transmitter cannot enable correct dynamic spectrum access. For example, the low strength of a primary transmitter's signal does not assure that there will be no interference to a nearby primary receiver. In addition, the presence of a primary transmitter's signal does not mean that CR network users cannot access the spectrum since there might not be any primary receiver in the vicinity. Despite the existing elegant and clever solutions to the DSA problem no robust, implementable scheme has emerged. In this paper, we challenge the basic premises of the proposed schemes. We further argue that addressing the technical challenges we face in deploying robust CR networks can only be achieved if we radically change the way we design their basic functionalities. In support of our argument, we present a set of real-world scenarios, inspired by realistic settings in commercial telecommunications networks, focusing on spectrum sensing as a basic and critical functionality in the deployment of CRs. We use these scenarios to show why existing DSA paradigms are not amenable to realistic deployment in complex wireless environments.Comment: Work in progres

Federated learning enables big data for rare cancer boundary detection

Although machine learning (ML) has shown promise across disciplines, out-of-sample generalizability is concerning. This is currently addressed by sharing multi-site data, but such centralization is challenging/infeasible to scale due to various limitations. Federated ML (FL) provides an alternative paradigm for accurate and generalizable ML, by only sharing numerical model updates. Here we present the largest FL study to-date, involving data from 71 sites across 6 continents, to generate an automatic tumor boundary detector for the rare disease of glioblastoma, reporting the largest such dataset in the literature (n = 6, 314). We demonstrate a 33% delineation improvement for the surgically targetable tumor, and 23% for the complete tumor extent, over a publicly trained model. We anticipate our study to: 1) enable more healthcare studies informed by large diverse data, ensuring meaningful results for rare diseases and underrepresented populations, 2) facilitate further analyses for glioblastoma by releasing our consensus model, and 3) demonstrate the FL effectiveness at such scale and task-complexity as a paradigm shift for multi-site collaborations, alleviating the need for data-sharing

The Midwest Sarcoma Trials Partnership: Bridging academic and community networks in a collaborative approach to sarcoma

The treatment of sarcoma necessitates a collaborative approach, given its rarity and complex management. At a single institution, multidisciplinary teams of specialists determine and execute treatment plans involving surgical, radiation, and medical management. Treatment guidelines for systemic therapies in advanced or nonresectable soft tissue sarcoma have advanced in recent years as new immunotherapies and targeted therapies become available. Collaboration between institutions is necessary to facilitate accrual to clinical trials. Here, we describe the success of the Midwest Sarcoma Trials Partnership (MWSTP) in creating a network encompassing large academic centers and local community sites. We propose a new model utilizing online platforms to expand the reach of clinical expertise for the treatment of advanced soft tissue sarcoma

The impact of TSC-1 and -2 mutations on response to therapy in malignant PEComa: A multicenter retrospective analysis

BACKGROUND: Perivascular epithelioid cell neoplasms (PEComas) are a diverse family of mesenchymal tumors with myomelanocytic differentiation that disproportionately affect women and can be associated with tuberous sclerosis (TS). Although mTOR inhibition is widely used as first-line treatment, it is unclear what genomic alterations exist in these tumors and how they influence the response to therapy. METHODS: This was a multicenter study conducted at five sites within the US. The data were collected from 1 January 2004 to 31 January 2021. We conducted a retrospective analysis to identify PEComa patients with next-generation sequencing (NGS) data and compared outcomes based on mutations. RESULTS: No significant differences in survival were identified between CONCLUSIONS: We were unable to detect differences in survival based on genomic alterations or PFS between mTOR inhibition versus other systemic therapies. Future studies should seek to identify other drivers o

Numerical evidence toward a 2-adic equivariant ''Main Conjecture''

International audienceWe test a conjectural non abelian refinement of the classical 2-adic Main Conjecture of Iwasawa theory. In the first part, we show how, in the special case that we study, the validity of this refinement is equivalent to a congruence condition on the coefficients of some power series. Then, in the second part, we explain how to compute the first coefficients of this power series and thus numerically check the conjecture in that setting

Prenatal exposures and exposomics of asthma

This review examines the causal investigation of preclinical development of childhood asthma using exposomic tools. We examine the current state of knowledge regarding early-life exposure to non-biogenic indoor air pollution and the developmental modulation of the immune system. We examine how metabolomics technologies could aid not only in the biomarker identification of a particular asthma phenotype, but also the mechanisms underlying the immunopathologic process. Within such a framework, we propose alternate components of exposomic investigation of asthma in which, the exposome represents a reiterative investigative process of targeted biomarker identification, validation through computational systems biology and physical sampling of environmental medi

The Quantum Hall Effect of Interacting Electrons in a Periodic Potential

We consider the influence of an external periodic potential on the fractional quantum Hall effect of two-dimensional interacting electron systems. For many electrons on a torus, we find that the splitting of incompressible ground state degeneracies by a weak external potential diminishes as $\exp ( - L/ \xi)$ at large system size $L$. We present numerical results consistent with a scenario in which $\xi$ diverges at continuous phase transitions from fractional to integer quantum Hall states which occur with increasing external potential strength.Comment: 4 pages, REVTeX, 3 epsf-embedded color postscript figures, submitted to PRB (Rapid Comm.), added reference in revised versio