cometadata/datacite-titles-descriptions-related-identifiers huggingface dataset:
DOI: 10.3886/e244967v1
title: Communicating Darkness: Visitor Preferences for Dark Sky Interpretation

description: Data for article 'Communicating Darkness: Visitor Preferences for Dark Sky Interpretation' published in Journal of Interpretation Research. <br><br>Abstract:<br>Utah parks are attracting an increasing number of visitors
due to the quality dark sky viewing opportunities. Despite increasing
engagement in nighttime recreation, limited research exists on visitor interest
in interpretation for dark skies in state and national parks. Nighttime visitors
at nine Utah state and national park units certified as dark sky parks were
surveyed to evaluate their preferences for dark sky-related interpretive topics
and communication methods. Visitors expressed the strongest interest in
astronomy and improving dark sky viewing, with ranger-led programs emerging as
the most favored delivery method. National park visitors showed greater
interest than state park visitors in self-guided learning formats such as
interpretive displays and mobile apps for topics such as dark sky
viewing/astronomy and viewing wildlife at night. These findings highlight the benefits
of diverse, yet targeted communication strategies to improve visitor
experiences of dark skies and foster stewardship of natural darkness in parks. <br>
DOI: 10.15468/dl.ne32au
title: Occurrence Download

description: A dataset containing 203 species occurrences available in GBIF matching the query:
{
 "and" : [
 "OccurrenceStatus is Present",
 "TaxonKey is Cebus aequatorialis"
 ]
}

 The dataset includes 203 records from 10 constituent datasets; see https://api.gbif.org/v1/occurrence/download/0014688-260129131611470/datasets/export for details.
 
Data from some individual datasets included in this download may be licensed under less restrictive terms.
DOI: 10.15468/dl.nxs5s2
title: Occurrence Download

description: A dataset containing 1050 species occurrences available in GBIF matching the query:
{
 "and" : [
 "HasCoordinate is true",
 "TaxonKey is Chordata",
 "DecimalLatitude is greater than or equal to 35.3093924412505",
 "DecimalLatitude is less than or equal to 35.3992235587496",
 "DecimalLongitude is greater than or equal to -119.639084281315",
 "DecimalLongitude is less than or equal to -119.528941718685",
 "Year is greater than or equal to 1927",
 "Year is less than or equal to 2026"
 ]
}

 The dataset includes 1050 records from 16 constituent datasets; see https://api.gbif.org/v1/occurrence/download/0014689-260129131611470/datasets/export for details.
 
Data from some individual datasets included in this download may be licensed under less restrictive terms.
DOI: 10.15468/dl.b8y282
title: Occurrence Download

description: A dataset containing 99 species occurrences available in GBIF matching the query:
{
 "and" : [
 "GadmGid is USA.2_1",
 "TaxonKey is Phora"
 ]
}

 The dataset includes 99 records from 6 constituent datasets; see https://api.gbif.org/v1/occurrence/download/0014691-260129131611470/datasets/export for details.
 
Data from some individual datasets included in this download may be licensed under less restrictive terms.
DOI: 10.15468/dl.gw9dwf
title: Occurrence Download

description: A dataset containing 6716 species occurrences available in GBIF matching the query:
{
 "and" : [
 "HasCoordinate is true",
 "HasGeospatialIssue is false",
 "TaxonKey is Pulsatrix koeniswaldiana"
 ]
}

 The dataset includes 6716 records from 20 constituent datasets; see https://api.gbif.org/v1/occurrence/download/0014690-260129131611470/datasets/export for details.
 
Data from some individual datasets included in this download may be licensed under less restrictive terms.
DOI: 10.25934/pr00012614.0
title: Available datapackage for study 'Maximizing Child Health and Learning Potential: Promoting A School Culture of Safety in the Era of COVID-19: Feasibility of Strategic COVID-19 Testing Protocols in At-Risk Urban Schools'

description: Vivli is an independent, non-profit organization that has developed a global data-sharing and analytics platform to serve all elements of the international research community. Our mission is to promote, coordinate, and facilitate scientific sharing and reuse of clinical research data through the creation and implementation of a sustainable global data-sharing enterprise. The Vivli platform includes an independent data repository, in-depth search engine and a cloud-based, secure analytics platform.
DOI: 10.6084/m9.figshare.29713216
title: Research access barriers in amyotrophic lateral sclerosis

description: As the general population ages, amyotrophic lateral sclerosis (ALS) incidence and prevalence are expected to rise, and the barriers that limit participation in ALS clinical research studies may increase. In this report, we highlight key challenges and available resources for accessing clinical research. We emphasize the importance of education and engagement among individuals with ALS and their families, clinicians, and researchers. Addressing accessibility and fostering trust in ALS research participation is essential to advance treatments for this devastating disease. We propose practical strategies to overcome participation barriers, including decentralized trial models, remote participation options, and expanded outreach through patient navigators, advisory committees, and digital tools. Strengthening partnerships among individuals with ALS, caregivers, researchers, ALS organizations, regulators, and industry, will help align research efforts with community needs and accelerate therapeutic development.
DOI: 10.6084/m9.figshare.29713216.v1
title: Research access barriers in amyotrophic lateral sclerosis

description: As the general population ages, amyotrophic lateral sclerosis (ALS) incidence and prevalence are expected to rise, and the barriers that limit participation in ALS clinical research studies may increase. In this report, we highlight key challenges and available resources for accessing clinical research. We emphasize the importance of education and engagement among individuals with ALS and their families, clinicians, and researchers. Addressing accessibility and fostering trust in ALS research participation is essential to advance treatments for this devastating disease. We propose practical strategies to overcome participation barriers, including decentralized trial models, remote participation options, and expanded outreach through patient navigators, advisory committees, and digital tools. Strengthening partnerships among individuals with ALS, caregivers, researchers, ALS organizations, regulators, and industry, will help align research efforts with community needs and accelerate therapeutic development.
DOI: 10.6084/m9.figshare.30429826
title: Self-reported initiation apathy is related to worse quality of life in amyotrophic lateral sclerosis

description: <i>Objective:</i> Apathy is the most prevalent behavioral impairment or difficulty for people with ALS (pwALS), with Initiation apathy (a lack of motivation for self-generation of thoughts and/or actions) the most common subtype. Self-rated or self-perceived quality of life (sQoL) is impacted for pwALS, but the relationship to apathy subtypes is unknown. The aim was to explore the relationship between sQoL domains and apathy in pwALS. <i>Methods:</i> 32 pwALS were recruited and completed self-rated measures of apathy (Dimensional Apathy Scale), depression, anxiety, and emotional lability. The ALS-specific QoL short-form instrument was used to measure QoL. Cognitive functioning and functional disability were measured. Exploratory, comparative, and predictive multiple hierarchical regression analyses were performed. <i>Results:</i> Initiation apathy was the most common apathy subtype at 37.5% (<i>N</i> = 12). PwALS with Initiation apathy had higher depressive symptoms (p &lt;.05, d = 1.11 large effect) and lower cognitive functioning (p &lt;.05, d = 0.76 medium effect) than those without apathy. PwALS with Initiation apathy had significantly worse sQoL in domains of interaction with people and the environment (p &lt;.05, d = 0.92, large effect) and negative emotions (p &lt;.05, d = 0.80, large effect) than those without apathy. Regression analysis showed Initiation apathy was a significant negative predictor of the sQoL domain of interaction with people and the environment (beta =-.20, p &lt;.01), controlling for confounders (functional disability, depression, cognitive functioning). <i>Conclusions:</i> Initiation apathy was associated with QoL domains of interaction with people and the environment, from the perspective of the pwALS. This emphasizes the importance of self-rating or self-perception for clinical and researcher assessment of apathy and QoL for pwALS.
DOI: 10.6084/m9.figshare.30429826.v1
title: Self-reported initiation apathy is related to worse quality of life in amyotrophic lateral sclerosis

description: <i>Objective:</i> Apathy is the most prevalent behavioral impairment or difficulty for people with ALS (pwALS), with Initiation apathy (a lack of motivation for self-generation of thoughts and/or actions) the most common subtype. Self-rated or self-perceived quality of life (sQoL) is impacted for pwALS, but the relationship to apathy subtypes is unknown. The aim was to explore the relationship between sQoL domains and apathy in pwALS. <i>Methods:</i> 32 pwALS were recruited and completed self-rated measures of apathy (Dimensional Apathy Scale), depression, anxiety, and emotional lability. The ALS-specific QoL short-form instrument was used to measure QoL. Cognitive functioning and functional disability were measured. Exploratory, comparative, and predictive multiple hierarchical regression analyses were performed. <i>Results:</i> Initiation apathy was the most common apathy subtype at 37.5% (<i>N</i> = 12). PwALS with Initiation apathy had higher depressive symptoms (p &lt;.05, d = 1.11 large effect) and lower cognitive functioning (p &lt;.05, d = 0.76 medium effect) than those without apathy. PwALS with Initiation apathy had significantly worse sQoL in domains of interaction with people and the environment (p &lt;.05, d = 0.92, large effect) and negative emotions (p &lt;.05, d = 0.80, large effect) than those without apathy. Regression analysis showed Initiation apathy was a significant negative predictor of the sQoL domain of interaction with people and the environment (beta =-.20, p &lt;.01), controlling for confounders (functional disability, depression, cognitive functioning). <i>Conclusions:</i> Initiation apathy was associated with QoL domains of interaction with people and the environment, from the perspective of the pwALS. This emphasizes the importance of self-rating or self-perception for clinical and researcher assessment of apathy and QoL for pwALS.
DOI: 10.6084/m9.figshare.29967104
title: Perceptions of healthcare professionals on optimal delivery of noninvasive ventilation care to people living with motor neuron disease

description: <i>Background:</i> Patients with motor neuron disease (MND) often do not experience the full survival and quality of life benefits of noninvasive ventilation (NIV). Successful delivery of NIV is challenging to multiple healthcare professionals involved in the respiratory care patient journey and considering their perspectives is crucial in order to understand how to deliver optimal care. <i>Objective:</i> To identify the factors that influence NIV delivery in MND from a healthcare professional perspective and understand how obstacles can be overcome to optimize care. <i>Methods:</i> Qualitative focus group discussions with healthcare professionals delivering respiratory care and support to MND patients in the UK and charity representatives. <i>Results:</i> Thirty healthcare professionals and three charity representatives participated in five focus groups. A range of factors that influence the delivery of NIV across the entire respiratory care pathway were identified. These were grouped under four main themes: multidisciplinary working; NIV service structure; professional further education and training; and good use of NIV and effective ventilation. <i>Conclusions:</i> There is a need for specific resources to support service delivery; frequent, funded, and structured training to support healthcare professionals to deliver good care; as well as ways to encourage optimal staff practice so patients get the best care.
DOI: 10.6084/m9.figshare.29967104.v1
title: Perceptions of healthcare professionals on optimal delivery of noninvasive ventilation care to people living with motor neuron disease

description: <i>Background:</i> Patients with motor neuron disease (MND) often do not experience the full survival and quality of life benefits of noninvasive ventilation (NIV). Successful delivery of NIV is challenging to multiple healthcare professionals involved in the respiratory care patient journey and considering their perspectives is crucial in order to understand how to deliver optimal care. <i>Objective:</i> To identify the factors that influence NIV delivery in MND from a healthcare professional perspective and understand how obstacles can be overcome to optimize care. <i>Methods:</i> Qualitative focus group discussions with healthcare professionals delivering respiratory care and support to MND patients in the UK and charity representatives. <i>Results:</i> Thirty healthcare professionals and three charity representatives participated in five focus groups. A range of factors that influence the delivery of NIV across the entire respiratory care pathway were identified. These were grouped under four main themes: multidisciplinary working; NIV service structure; professional further education and training; and good use of NIV and effective ventilation. <i>Conclusions:</i> There is a need for specific resources to support service delivery; frequent, funded, and structured training to support healthcare professionals to deliver good care; as well as ways to encourage optimal staff practice so patients get the best care.
DOI: 10.6084/m9.figshare.30069496
title: Reliable change indices for the cognitive section of Portuguese version of the Edinburgh Cognitive and Behavioural ALS screen (ECAS)

description: This study aimed to derive standardized regression-based (SRB) reliable change indices (RCIs) for the cognitive section of the Portuguese Edinburgh Cognitive and Behavioral ALS Screen (ECAS-C). Forty-nine MND patients undergoing the ECAS were followed-up (T1) at 7.2 ± 2 months (range = 5–12). RCIs were derived <i>via</i> an SRB approach by accounting for demographic, motor-functional and test-related variables. Practice effects were detected as to Total and Memory measures; all ECAS-C measures proved to be reliable at retest. Baseline ECAS-C measures predicted their follow-up performances. SRB RCIs herewith delivered will help assess MND patients’ cognition over time, although they would benefit from further validation in independent cohorts.
DOI: 10.6084/m9.figshare.30069496.v1
title: Reliable change indices for the cognitive section of Portuguese version of the Edinburgh Cognitive and Behavioural ALS screen (ECAS)

description: This study aimed to derive standardized regression-based (SRB) reliable change indices (RCIs) for the cognitive section of the Portuguese Edinburgh Cognitive and Behavioral ALS Screen (ECAS-C). Forty-nine MND patients undergoing the ECAS were followed-up (T1) at 7.2 ± 2 months (range = 5–12). RCIs were derived <i>via</i> an SRB approach by accounting for demographic, motor-functional and test-related variables. Practice effects were detected as to Total and Memory measures; all ECAS-C measures proved to be reliable at retest. Baseline ECAS-C measures predicted their follow-up performances. SRB RCIs herewith delivered will help assess MND patients’ cognition over time, although they would benefit from further validation in independent cohorts.
DOI: 10.6084/m9.figshare.29430985
title: Quantitative susceptibility mapping for investigating brain iron deposits in amyotrophic lateral sclerosis: correlations with clinical phenotype and disease progression

description: <i>Objective</i>: Perturbation of iron homeostasis is a potential key mechanism involved in neurodegeneration across many neurological disorders, including amyotrophic lateral sclerosis (ALS). We hypothesized that changes in quantitative susceptibility mapping (QSM) could capture perturbations in brain iron concentration in subgroups of ALS patients stratified by clinical phenotype and disease progression. <i>Method</i>: We enrolled 38 ALS patients (23 males – mean age: 58.7 ± 9.8), screened by clinical (ALS functional rating scale-revised, ALSFRS-R) and neuropsychological scales. Patients were a posteriori classified as fast (<i>n</i> = 16) or slow (<i>n</i> = 22) progressors. Two subgroups were also considered: pyramidal (or upper motor neuron+, UMN+) patients (<i>n</i> = 18), and patients with other phenotypes (<i>n</i> = 20). <i>Results</i>: Comparing fast vs. slow progressors, significant differences in iron deposits were observed in the left (<i>p</i> = 0.028) and right amygdala (<i>p</i> = 0.022), and in susceptibility distribution on the right hippocampus (<i>p</i> = 0.0011). Comparing UMN+ vs. other phenotypes, significant susceptibility differences emerged in the left thalamus (<i>p</i> = 0.0014) and right amygdala (<i>p</i> = 0.001). QSM changes were associated with baseline ALSFRS-R (rho = 0.36, p = 0.026) in the left paracentral cortex, and iron concentration with UMN score (rho = 0.35, <i>p</i> = 0.034). Moreover, the Edinburgh Cognitive and Behavioral ALS Screen (ECAS) was associated with iron deposits in the left thalamus (rho=−0.46, <i>p</i> = 0.0041). <i>Conclusions</i>: We confirmed that QSM alterations in extra-motor areas and subcortical regions may be distinctive hallmarks of neurodegeneration in pure/dominant UMN phenotypes of ALS. Moreover, we showed that QSM could be a valuable tool to differentiate patients with different progression rates and phenotypes, suggesting that QSM may support a prognostically useful early stratification of ALS patients.
DOI: 10.6084/m9.figshare.29430985.v1
title: Quantitative susceptibility mapping for investigating brain iron deposits in amyotrophic lateral sclerosis: correlations with clinical phenotype and disease progression

description: <i>Objective</i>: Perturbation of iron homeostasis is a potential key mechanism involved in neurodegeneration across many neurological disorders, including amyotrophic lateral sclerosis (ALS). We hypothesized that changes in quantitative susceptibility mapping (QSM) could capture perturbations in brain iron concentration in subgroups of ALS patients stratified by clinical phenotype and disease progression. <i>Method</i>: We enrolled 38 ALS patients (23 males – mean age: 58.7 ± 9.8), screened by clinical (ALS functional rating scale-revised, ALSFRS-R) and neuropsychological scales. Patients were a posteriori classified as fast (<i>n</i> = 16) or slow (<i>n</i> = 22) progressors. Two subgroups were also considered: pyramidal (or upper motor neuron+, UMN+) patients (<i>n</i> = 18), and patients with other phenotypes (<i>n</i> = 20). <i>Results</i>: Comparing fast vs. slow progressors, significant differences in iron deposits were observed in the left (<i>p</i> = 0.028) and right amygdala (<i>p</i> = 0.022), and in susceptibility distribution on the right hippocampus (<i>p</i> = 0.0011). Comparing UMN+ vs. other phenotypes, significant susceptibility differences emerged in the left thalamus (<i>p</i> = 0.0014) and right amygdala (<i>p</i> = 0.001). QSM changes were associated with baseline ALSFRS-R (rho = 0.36, p = 0.026) in the left paracentral cortex, and iron concentration with UMN score (rho = 0.35, <i>p</i> = 0.034). Moreover, the Edinburgh Cognitive and Behavioral ALS Screen (ECAS) was associated with iron deposits in the left thalamus (rho=−0.46, <i>p</i> = 0.0041). <i>Conclusions</i>: We confirmed that QSM alterations in extra-motor areas and subcortical regions may be distinctive hallmarks of neurodegeneration in pure/dominant UMN phenotypes of ALS. Moreover, we showed that QSM could be a valuable tool to differentiate patients with different progression rates and phenotypes, suggesting that QSM may support a prognostically useful early stratification of ALS patients.
DOI: 10.6084/m9.figshare.30153082
title: Serum NfL, but not GFAP, differentiates primary lateral sclerosis from adrenomyeloneuropathy and hereditary spastic paraplegia type 4

description: Neurodegenerative upper motor neuron (UMN) syndromes ranging from primary lateral sclerosis (PLS) to pure and complicated types of hereditary spastic paraplegia (HSP) remain challenging to differentiate clinically, especially in the early stages of disease. As they share the hallmark of spastic paraparesis, easily accessible biomarkers are warranted to facilitate an early diagnosis. We examined serum neurofilament light chain (sNfL) and serum glial fibrillary acidic protein (sGFAP) as diagnostic biomarkers to differentiate PLS from HSP, represented by two paradigmatic subtypes: SPG4, the most common type of pure HSP, and adrenomyeloneuropathy (AMN), a common complicated form of HSP. In addition to sNfL and sGFAP raw levels, we used age-adjusted z-scores to account for age-related biomarker level increases. In our cohort of 18 PLS patients, 18 AMN patients, 25 SPG4 patients and 60 controls, sNfL z-scores were higher in PLS than in SPG4 (<i>p</i> &lt; 0.001), AMN (<i>p</i> = 0.03), and controls (<i>p</i> &lt; 0.001). Furthermore, sNfL z-scores allowed distinguishing PLS from SPG4 (AUC 0.82, 95% CI 0.67–0.98) and—slightly less accurate—from AMN (AUC 0.77, 95% CI 0.60–0.95). sGFAP z-scores did not differ significantly between groups. Our study suggests that serum NfL, but not GFAP, is a potential diagnostic biomarker in degenerative UMN diseases and may help to differentiate PLS from pure and complicated forms of HSP. Our results indicate that axonal degeneration—the source of NfL release—is predominant over astrocytic pathology—the source of GFAP release—in PLS, AMN, and SPG4.
DOI: 10.6084/m9.figshare.30153082.v1
title: Serum NfL, but not GFAP, differentiates primary lateral sclerosis from adrenomyeloneuropathy and hereditary spastic paraplegia type 4

description: Neurodegenerative upper motor neuron (UMN) syndromes ranging from primary lateral sclerosis (PLS) to pure and complicated types of hereditary spastic paraplegia (HSP) remain challenging to differentiate clinically, especially in the early stages of disease. As they share the hallmark of spastic paraparesis, easily accessible biomarkers are warranted to facilitate an early diagnosis. We examined serum neurofilament light chain (sNfL) and serum glial fibrillary acidic protein (sGFAP) as diagnostic biomarkers to differentiate PLS from HSP, represented by two paradigmatic subtypes: SPG4, the most common type of pure HSP, and adrenomyeloneuropathy (AMN), a common complicated form of HSP. In addition to sNfL and sGFAP raw levels, we used age-adjusted z-scores to account for age-related biomarker level increases. In our cohort of 18 PLS patients, 18 AMN patients, 25 SPG4 patients and 60 controls, sNfL z-scores were higher in PLS than in SPG4 (<i>p</i> &lt; 0.001), AMN (<i>p</i> = 0.03), and controls (<i>p</i> &lt; 0.001). Furthermore, sNfL z-scores allowed distinguishing PLS from SPG4 (AUC 0.82, 95% CI 0.67–0.98) and—slightly less accurate—from AMN (AUC 0.77, 95% CI 0.60–0.95). sGFAP z-scores did not differ significantly between groups. Our study suggests that serum NfL, but not GFAP, is a potential diagnostic biomarker in degenerative UMN diseases and may help to differentiate PLS from pure and complicated forms of HSP. Our results indicate that axonal degeneration—the source of NfL release—is predominant over astrocytic pathology—the source of GFAP release—in PLS, AMN, and SPG4.