cometadata/datacite-titles-descriptions-related-identifiers huggingface dataset:
DOI: 10.6084/m9.figshare.30219477.v1
title: SPARCC: Semi-Parametric Robust Estimation in a Right-Censored Covariate Model

description: In Huntington disease research, a current goal is to understand how symptoms change prior to a clinical diagnosis. Statistically, achieving this goal entails modeling symptom severity as a function of the covariate “time of diagnosis,” which is often heavily right-censored in observational studies. Existing estimators that handle right-censored covariates, such as the complete case estimator and maximum likelihood estimator, vary in their statistical efficiency and robustness to misspecifications of nuisance parameters (i.e., densities for the censored covariate and censoring variable). We propose a new “SPARCC” estimator (SemiPArametric Robust estimation in a right-Censored Covariate model) that is robust and efficient. When the nuisance parameters are modeled parametrically, the SPARCC estimator is doubly robust, that is, consistent if at least one nuisance parameter is correctly specified, and semiparametric efficient if both are correctly specified. When the nuisance parameters are estimated via nonparametric or machine learning methods that converge sufficiently fast, the SPARCC estimator is consistent and semiparametric efficient. We show empirically that the proposed estimator, implemented in the R package sparcc, has its claimed properties, and we apply it to estimate Huntington disease symptom trajectories using data from the Enroll-HD study. Supplementary materials for this article are available online, including a standardized description of the materials available for reproducing the work.
DOI: 10.6084/m9.figshare.29980323
title: Diversification of Kratom in US Markets: Results from an Online Survey and Chemical Assay of Products

description: Kratom (<i>Mitragyna speciosa</i>) products in the US have diversified from dried leaf to now include edibles, extracts, teas, and tonics. Higher alkaloid content and/or greater oral exposure across formulations expose consumers to potentially greater amounts of alkaloids per serving in a shorter duration of time, thereby potentially increasing product effect and risk profiles. Six kratom vendors disseminated our anonymous online survey. Participants reported on products use patterns, perceived benefits, and adverse effects. Product samples were classified: powders, edibles, liquids, and teas and were analyzed for alkaloid content using UPLC-MS/MS. The final sample consisted of 421 participants, using 61 products. They were 61.8% male and 46.3% between 31 and 50 years. Whole-leaf powders were most popular and reported to provide more pain relief, energy, and improved sleep compared to other products. The most common adverse effect was constipation (73.4%). Edibles were associated with tolerance while liquids were associated with consuming more than intended. Alkaloid content was significantly higher in edibles and whole-leaf powders compared to teas and concentrated liquid extracts. Diversification of kratom products and higher alkaloid content per serving or dose expose consumers to inadvertent toxicity. Further clinical investigation of risk profiles for different formulations is needed.
DOI: 10.6084/m9.figshare.29980323.v1
title: Diversification of Kratom in US Markets: Results from an Online Survey and Chemical Assay of Products

description: Kratom (<i>Mitragyna speciosa</i>) products in the US have diversified from dried leaf to now include edibles, extracts, teas, and tonics. Higher alkaloid content and/or greater oral exposure across formulations expose consumers to potentially greater amounts of alkaloids per serving in a shorter duration of time, thereby potentially increasing product effect and risk profiles. Six kratom vendors disseminated our anonymous online survey. Participants reported on products use patterns, perceived benefits, and adverse effects. Product samples were classified: powders, edibles, liquids, and teas and were analyzed for alkaloid content using UPLC-MS/MS. The final sample consisted of 421 participants, using 61 products. They were 61.8% male and 46.3% between 31 and 50 years. Whole-leaf powders were most popular and reported to provide more pain relief, energy, and improved sleep compared to other products. The most common adverse effect was constipation (73.4%). Edibles were associated with tolerance while liquids were associated with consuming more than intended. Alkaloid content was significantly higher in edibles and whole-leaf powders compared to teas and concentrated liquid extracts. Diversification of kratom products and higher alkaloid content per serving or dose expose consumers to inadvertent toxicity. Further clinical investigation of risk profiles for different formulations is needed.
DOI: 10.6084/m9.figshare.30992095
title: Perceptions of people with motor neurone disease regarding the impact of their power wheelchairs on health and participation

description: People with motor neurone disease can quickly progress to using power wheelchairs as their primary means of mobility. Clarification of how power wheelchairs and their power seat functions impact daily life is needed to assist clinical and funding decisions. This study identified the impacts that people with motor neurone disease perceive their power wheelchairs have on their health and participation in activities and life roles. A cross-sectional, mixed-methods survey was conducted online with people with motor neurone disease using power wheelchairs in New Zealand. Quantitative data were analysed using descriptive statistics. Qualitative data were analysed using content analysis. Responses (<i>n</i> = 24) indicated that power wheelchairs positively impact people’s psychological health, including happiness (15/24; 63%), self-esteem (14/24; 59%), and inclusion (18/24; 75%), and participation in valued activities, particularly outside of the home (18/24; 75%). All power seat functions were utilised. Qualitative analysis revealed themes around the impact of power wheelchairs: (1) Freedom and choice to participate in valued activities, (2) Enabling social interaction, and (3) Self-managing physical and psychological health. Power wheelchairs profoundly impact people’s psychological health and participation. The psychological and participation-related benefits of power wheelchairs indicate a strong health and economic rationale for including power seat elevation, along with other power seat functions. Power wheelchairs have a profound impact on people’s psychological health, influencing aspects such as inclusion, feelings of happiness, safety, confidence, and a sense of well-being.Activity participation outside the home and social interaction are important for people with motor neurone disease.Providing a power wheelchair early, while people are still walking or transferring, extends independence and participation in valued roles and activities, and people with motor neurone disease valued this timing.Power seat elevation is highly valued for enabling continued participation in activities and social interaction in addition to assisting transfers. Power wheelchairs have a profound impact on people’s psychological health, influencing aspects such as inclusion, feelings of happiness, safety, confidence, and a sense of well-being. Activity participation outside the home and social interaction are important for people with motor neurone disease. Providing a power wheelchair early, while people are still walking or transferring, extends independence and participation in valued roles and activities, and people with motor neurone disease valued this timing. Power seat elevation is highly valued for enabling continued participation in activities and social interaction in addition to assisting transfers.
DOI: 10.6084/m9.figshare.30992095.v1
title: Perceptions of people with motor neurone disease regarding the impact of their power wheelchairs on health and participation

description: People with motor neurone disease can quickly progress to using power wheelchairs as their primary means of mobility. Clarification of how power wheelchairs and their power seat functions impact daily life is needed to assist clinical and funding decisions. This study identified the impacts that people with motor neurone disease perceive their power wheelchairs have on their health and participation in activities and life roles. A cross-sectional, mixed-methods survey was conducted online with people with motor neurone disease using power wheelchairs in New Zealand. Quantitative data were analysed using descriptive statistics. Qualitative data were analysed using content analysis. Responses (<i>n</i> = 24) indicated that power wheelchairs positively impact people’s psychological health, including happiness (15/24; 63%), self-esteem (14/24; 59%), and inclusion (18/24; 75%), and participation in valued activities, particularly outside of the home (18/24; 75%). All power seat functions were utilised. Qualitative analysis revealed themes around the impact of power wheelchairs: (1) Freedom and choice to participate in valued activities, (2) Enabling social interaction, and (3) Self-managing physical and psychological health. Power wheelchairs profoundly impact people’s psychological health and participation. The psychological and participation-related benefits of power wheelchairs indicate a strong health and economic rationale for including power seat elevation, along with other power seat functions. Power wheelchairs have a profound impact on people’s psychological health, influencing aspects such as inclusion, feelings of happiness, safety, confidence, and a sense of well-being.Activity participation outside the home and social interaction are important for people with motor neurone disease.Providing a power wheelchair early, while people are still walking or transferring, extends independence and participation in valued roles and activities, and people with motor neurone disease valued this timing.Power seat elevation is highly valued for enabling continued participation in activities and social interaction in addition to assisting transfers. Power wheelchairs have a profound impact on people’s psychological health, influencing aspects such as inclusion, feelings of happiness, safety, confidence, and a sense of well-being. Activity participation outside the home and social interaction are important for people with motor neurone disease. Providing a power wheelchair early, while people are still walking or transferring, extends independence and participation in valued roles and activities, and people with motor neurone disease valued this timing. Power seat elevation is highly valued for enabling continued participation in activities and social interaction in addition to assisting transfers.
DOI: 10.6084/m9.figshare.26640363
title: Psychological resilience is protective against cognitive deterioration in motor neuron diseases

description: Recent studies suggest that psychological resilience (PR) is associated with more well-preserved cognition in healthy subjects (HS), but an investigation of such phenomenon in patients with motor neuron diseases (MNDs) is still lacking. The aim of our study was therefore to evaluate PR and its relationship with baseline cognitive/behavioral and mood symptoms, as well as longitudinal cognitive functioning, in MNDs. 94 MND patients and 87 demographically matched HS were enrolled. PR was assessed using the Connor-Davidson Resilience Scale (CD-RISC). Patients were further evaluated both at baseline and every 6 months for cognitive/behavioral disturbances using the Edinburgh Cognitive and Behavioral ALS Screen (ECAS), and for mood symptoms using the Hospital Anxiety and Depression Scale (HADS). CD-RISC scores were compared between patients and HS using the Mann–Whitney <i>U</i> test, and regression models were applied to evaluate the role of CD-RISC scores in predicting baseline cognitive/behavioral and mood measures, as well as longitudinal cognitive performances, in MND patients. MND cases showed significantly greater PR compared to HS (<i>p</i> from &lt;0.001 to 0.02). In MNDs, higher PR levels were significant predictors of both greater cognitive performance (<i>p</i> from 0.01 to 0.05) and milder mood symptoms (<i>p</i> from &lt;0.001 to 0.04) at baseline, as well as less severe memory decline (<i>p</i> from 0.001 to 0.04) longitudinally. PR is an important protective factor against the onset and evolution of cognitive/mood disturbances in MNDs, suggesting the usefulness of resilience enhancement psychological interventions to prevent or delay cognitive and mood disorders in these neurodegenerative conditions.
DOI: 10.6084/m9.figshare.26640363.v1
title: Psychological resilience is protective against cognitive deterioration in motor neuron diseases

description: Recent studies suggest that psychological resilience (PR) is associated with more well-preserved cognition in healthy subjects (HS), but an investigation of such phenomenon in patients with motor neuron diseases (MNDs) is still lacking. The aim of our study was therefore to evaluate PR and its relationship with baseline cognitive/behavioral and mood symptoms, as well as longitudinal cognitive functioning, in MNDs. 94 MND patients and 87 demographically matched HS were enrolled. PR was assessed using the Connor-Davidson Resilience Scale (CD-RISC). Patients were further evaluated both at baseline and every 6 months for cognitive/behavioral disturbances using the Edinburgh Cognitive and Behavioral ALS Screen (ECAS), and for mood symptoms using the Hospital Anxiety and Depression Scale (HADS). CD-RISC scores were compared between patients and HS using the Mann–Whitney <i>U</i> test, and regression models were applied to evaluate the role of CD-RISC scores in predicting baseline cognitive/behavioral and mood measures, as well as longitudinal cognitive performances, in MND patients. MND cases showed significantly greater PR compared to HS (<i>p</i> from &lt;0.001 to 0.02). In MNDs, higher PR levels were significant predictors of both greater cognitive performance (<i>p</i> from 0.01 to 0.05) and milder mood symptoms (<i>p</i> from &lt;0.001 to 0.04) at baseline, as well as less severe memory decline (<i>p</i> from 0.001 to 0.04) longitudinally. PR is an important protective factor against the onset and evolution of cognitive/mood disturbances in MNDs, suggesting the usefulness of resilience enhancement psychological interventions to prevent or delay cognitive and mood disorders in these neurodegenerative conditions.
DOI: 10.6084/m9.figshare.26495951
title: Cognitive reserve as a modulator of cognitive decline and of behavioral symptoms in patients with amyotrophic lateral sclerosis

description: <i>Introduction</i>: Amyotrophic lateral sclerosis (ALS) has heterogeneous manifestations ranging from motor neuron degeneration to cognitive and behavioral impairment. This study aims to clarify the interactions between cognition and behavioral symptoms with relevant disease predictors and with cognitive reserve (CR), quantified through education, physical activity, and occupation proxies. <i>Methods</i>: A prospective sample of 162 ALS patients and 61 controls were evaluated with the Edinburgh Cognitive and Behavioral ALS Screen (ECAS) (dependent variable), a Cognitive Reserve Index questionnaire (CRIq) and demographic data (age and sex), and, for patients, clinical variables: disease duration, site of onset, the ALS Functional Rating Scale (ALSFRS), forced vital capacity (FVC), and gene mutation chromosome 9 open reading frame 72 (<i>C9orf72</i>) (independent variables). Multiple regression and mediation analyses were performed to predict cognitive and behavioral symptoms. <i>Results</i>: For the ALS group, the statistical model explained 38.8% of variance in ECAS total (<i>p</i> &lt; 0.001), 59.4% of executive functions (<i>p</i> &lt; 0.001), and 55% of behavioral symptoms (<i>p</i> &lt; 0.001). For controls, it accounted for 52.8% of variance in ECAS total (<i>p</i> &lt; 0.001). Interaction effects and mediation analysis showed CR is an ECAS total modulator, with a differential effect within groups (<i>p</i> &lt; 0.001). Verbal fluency was the single best cognitive score to differentiate patients from controls (<i>p</i> = 0.004), and the gene mutation <i>C9orf72</i> was found to be a behavioral symptom’ predictor in patients (<i>p</i> = 0.009). <i>Conclusion</i>: This study supports the proposed concept that CR acts as a cognitive modulator in ALS patients and healthy individuals. Moreover, CR also modulates behavioral manifestations in ALS.
DOI: 10.6084/m9.figshare.26495951.v1
title: Cognitive reserve as a modulator of cognitive decline and of behavioral symptoms in patients with amyotrophic lateral sclerosis

description: <i>Introduction</i>: Amyotrophic lateral sclerosis (ALS) has heterogeneous manifestations ranging from motor neuron degeneration to cognitive and behavioral impairment. This study aims to clarify the interactions between cognition and behavioral symptoms with relevant disease predictors and with cognitive reserve (CR), quantified through education, physical activity, and occupation proxies. <i>Methods</i>: A prospective sample of 162 ALS patients and 61 controls were evaluated with the Edinburgh Cognitive and Behavioral ALS Screen (ECAS) (dependent variable), a Cognitive Reserve Index questionnaire (CRIq) and demographic data (age and sex), and, for patients, clinical variables: disease duration, site of onset, the ALS Functional Rating Scale (ALSFRS), forced vital capacity (FVC), and gene mutation chromosome 9 open reading frame 72 (<i>C9orf72</i>) (independent variables). Multiple regression and mediation analyses were performed to predict cognitive and behavioral symptoms. <i>Results</i>: For the ALS group, the statistical model explained 38.8% of variance in ECAS total (<i>p</i> &lt; 0.001), 59.4% of executive functions (<i>p</i> &lt; 0.001), and 55% of behavioral symptoms (<i>p</i> &lt; 0.001). For controls, it accounted for 52.8% of variance in ECAS total (<i>p</i> &lt; 0.001). Interaction effects and mediation analysis showed CR is an ECAS total modulator, with a differential effect within groups (<i>p</i> &lt; 0.001). Verbal fluency was the single best cognitive score to differentiate patients from controls (<i>p</i> = 0.004), and the gene mutation <i>C9orf72</i> was found to be a behavioral symptom’ predictor in patients (<i>p</i> = 0.009). <i>Conclusion</i>: This study supports the proposed concept that CR acts as a cognitive modulator in ALS patients and healthy individuals. Moreover, CR also modulates behavioral manifestations in ALS.
DOI: 10.6084/m9.figshare.26113835
title: ‘Outcomes of genetic testing in the London MND Center: the importance of achieving timely results and correlations to family history’

description: <i>Background</i>: Despite recognition of the importance of genetic factors in the pathogenesis of MND and the increasing availability of genetic testing, testing practice remains highly variable. With the arrival of gene-targeted therapies there is a growing need to promptly identify actionable genetic results and patient death before receipt of results raises ethical dilemmas and limits access to novel therapies. <i>Objective</i>: To identify pathogenic mutations within a London tertiary MND center and their correlation with family history. To record waiting times for genetic results and deaths prior to receipt of results. <i>Methods</i>: In this series of 100 cases, genetic testing was offered to all patients with an MND diagnosis from the tertiary clinic. Data on demographics, disease progression and a detailed family history were taken. Time to receipt of genetic results and patient deaths prior to this were recorded.  <i>Results</i>: Of the 97 patients who accepted testing a genetic cause was identified in 10%, including seven C9orf72 and two positive SOD1 cases. Only three patients with positive genetic findings had a family history of MND, although alternative neurological diagnoses and symptoms in the family were frequently reported. 14% of patients who underwent testing were deceased by the time results were received, including one actionable SOD1 case.  <i>Conclusions</i>: Genetic testing should be made available to all patients who receive an MND diagnosis as family history alone is inadequate to identify potential familial cases. Time to receipt of results remains a significant issue due to the limited life expectancy following diagnosis.
DOI: 10.6084/m9.figshare.26113835.v1
title: ‘Outcomes of genetic testing in the London MND Center: the importance of achieving timely results and correlations to family history’

description: <i>Background</i>: Despite recognition of the importance of genetic factors in the pathogenesis of MND and the increasing availability of genetic testing, testing practice remains highly variable. With the arrival of gene-targeted therapies there is a growing need to promptly identify actionable genetic results and patient death before receipt of results raises ethical dilemmas and limits access to novel therapies. <i>Objective</i>: To identify pathogenic mutations within a London tertiary MND center and their correlation with family history. To record waiting times for genetic results and deaths prior to receipt of results. <i>Methods</i>: In this series of 100 cases, genetic testing was offered to all patients with an MND diagnosis from the tertiary clinic. Data on demographics, disease progression and a detailed family history were taken. Time to receipt of genetic results and patient deaths prior to this were recorded.  <i>Results</i>: Of the 97 patients who accepted testing a genetic cause was identified in 10%, including seven C9orf72 and two positive SOD1 cases. Only three patients with positive genetic findings had a family history of MND, although alternative neurological diagnoses and symptoms in the family were frequently reported. 14% of patients who underwent testing were deceased by the time results were received, including one actionable SOD1 case.  <i>Conclusions</i>: Genetic testing should be made available to all patients who receive an MND diagnosis as family history alone is inadequate to identify potential familial cases. Time to receipt of results remains a significant issue due to the limited life expectancy following diagnosis.
DOI: 10.15468/dl.wgv9ha
title: Occurrence Download

description: A dataset containing 6451 species occurrences available in GBIF matching the query:
{
 "and" : [
 "DatasetKey is Natural History Museum (London) Collection Specimens",
 "CollectionCode is PAL",
 "Country is one of (Argentina, Bolivia (Plurinational State of), Brazil, Colombia, French Guiana, Guyana, Paraguay, Peru, Suriname, Uruguay, Venezuela (Bolivarian Republic of), Ecuador, Chile)"
 ]
}

 The dataset includes 6451 records from 1 constituent datasets; see https://api.gbif.org/v1/occurrence/download/0071272-251120083545085/datasets/export for details.
 
Data from some individual datasets included in this download may be licensed under less restrictive terms.
DOI: 10.5281/zenodo.18134577
title: A reproducible local anomaly in Planck 2020 TE data at ℓ ≈ 305 (blind-test ready)
DOI: 10.5281/zenodo.18134578
title: A reproducible local anomaly in Planck 2020 TE data at ℓ ≈ 305 (blind-test ready)
DOI: 10.3886/e242321
title: NNDSS - Table IV. Tuberculosis

description: NNDSS - Table IV. Tuberculosis - 2014.This Table includes total number of cases reported in the United States, by region and by states, in accordance with the current method of displaying MMWR data. Data on United States will exclude counts from US territories. Footnote:C.N.M.I.: Commonwealth of Northern Mariana Islands. U: Unavailable. -: No reported cases. N: Not reportable. NN: Not Nationally Notifiable Cum: Cumulative year-to-date counts. Min: Minimum. Max: Maximum. * Case counts for reporting year 2013 and 2014 are provisional and subject to change. For further information on interpretation of these data, see http://wwwn.cdc.gov/nndss/document/ProvisionalNationaNotifiableDiseasesSurveillanceData20100927.pdf Updated reports to the National Center for HIV/AIDS, Viral Hepatitis, STD and TB Prevention. Data for TB are displayed quarterly.