cometadata/datacite-titles-descriptions-related-identifiers huggingface dataset:
DOI: 10.6084/m9.figshare.20406299
title: What are the relevant categories, modalities, and outcome measures for assessing lower limb somatosensory function in children with upper motor neuron lesions? A Delphi study

description: Somatosensory function of the lower limbs is rarely assessed in children with upper motor neuron lesions despite its potential relevance for motor function. We explored consensus regarding somatosensory categories (exteroception, proprioception, interoception, and body awareness), modalities, and outcome measures relevant to lower limb motor function. Fifteen international experts with experience of somatosensory function assessment participated in this Delphi study. Surveys of four rounds, conducted online, included questions on the relevance of somatosensory categories and modalities for motor function and on the use of potential outcome measures in clinical practice. The experts reached consensus on the relevance of six modalities of the categories exteroception, proprioception, and body awareness. Based on their feedback, we formulated three core criteria for somatosensory outcome measures, namely suitability for clinical practice, child-friendliness, and relevance for motor function. None of the nine available outcome measures fulfilled each criterion. The experts also highlighted the importance of using and interpreting the tests in relation to the child’s activity and participation. There was expert consensus on three categories and six modalities of somatosensory function relevant for lower limb motor function. However, existing outcome measures will need to be adapted for use in paediatric clinical practice. IMPLICATION FOR REHABILITATIONConsensus was established for the categories and modalities of somatosensory function relevant for lower limb motor function of children with UMN lesion.Outcome measures should cover tactile function, joint movement and joint position and dynamic position sense, and spatial and structural body representation.None of the nine existing outcome measures fulfilled the core criteria: feasibility for clinical practice, child-friendliness, and relevance to motor function. Consensus was established for the categories and modalities of somatosensory function relevant for lower limb motor function of children with UMN lesion. Outcome measures should cover tactile function, joint movement and joint position and dynamic position sense, and spatial and structural body representation. None of the nine existing outcome measures fulfilled the core criteria: feasibility for clinical practice, child-friendliness, and relevance to motor function.
DOI: 10.6084/m9.figshare.20509036
title: Group intervention programs and their impact on well-being and quality-of-life for adults living with a rare or orphan disease – realist review of literature

description: Adults living with a rare or orphan diseases (ROD) experience common psychosocial difficulties that are often poorly addressed in usual care. This realist literature review aims to inform the development, evaluation and implementation of evidence based group therapy programs adapted to shared needs of patients living with various ROD. The review is based on an analysis of Context-Mechanism-Outcome configurations. It included 21 primary studies published between 2010 and April 2022 and used a PRISMA process for study selection and inclusion. Our results show that group psychosocial interventions can help reduce perception of symptoms and psychological impacts of disease, improve social functioning and support and quality of life in patients. Group therapy programs seem promising for ROD-patients and should be considered within comprehensive treatment and support plans. However, more comprehensive studies of group therapies in context should aim to identify core active components of these interventions with ROD-patients. Implications for Rehabilitation:Rare or Orphan Diseases are varied, difficult to diagnose and have a major impact on all aspects of the patients’ lives (physical, emotional, psychological, social, professional).Psychosocial support is a key but underdeveloped component to support the recovery trajectory for these patients.In this review of group interventions, we identified a few promising practices adaptable to patients living with Rare or Orphan Diseases (Acceptance and commitment therapy, cognitive behavioural therapies, psychoeducational programs).Patients who received psychosocial group interventions are likely to experience improvement in their quality of life. Rare or Orphan Diseases are varied, difficult to diagnose and have a major impact on all aspects of the patients’ lives (physical, emotional, psychological, social, professional). Psychosocial support is a key but underdeveloped component to support the recovery trajectory for these patients. In this review of group interventions, we identified a few promising practices adaptable to patients living with Rare or Orphan Diseases (Acceptance and commitment therapy, cognitive behavioural therapies, psychoeducational programs). Patients who received psychosocial group interventions are likely to experience improvement in their quality of life.
DOI: 10.6084/m9.figshare.20406299.v1
title: What are the relevant categories, modalities, and outcome measures for assessing lower limb somatosensory function in children with upper motor neuron lesions? A Delphi study

description: Somatosensory function of the lower limbs is rarely assessed in children with upper motor neuron lesions despite its potential relevance for motor function. We explored consensus regarding somatosensory categories (exteroception, proprioception, interoception, and body awareness), modalities, and outcome measures relevant to lower limb motor function. Fifteen international experts with experience of somatosensory function assessment participated in this Delphi study. Surveys of four rounds, conducted online, included questions on the relevance of somatosensory categories and modalities for motor function and on the use of potential outcome measures in clinical practice. The experts reached consensus on the relevance of six modalities of the categories exteroception, proprioception, and body awareness. Based on their feedback, we formulated three core criteria for somatosensory outcome measures, namely suitability for clinical practice, child-friendliness, and relevance for motor function. None of the nine available outcome measures fulfilled each criterion. The experts also highlighted the importance of using and interpreting the tests in relation to the child’s activity and participation. There was expert consensus on three categories and six modalities of somatosensory function relevant for lower limb motor function. However, existing outcome measures will need to be adapted for use in paediatric clinical practice. IMPLICATION FOR REHABILITATIONConsensus was established for the categories and modalities of somatosensory function relevant for lower limb motor function of children with UMN lesion.Outcome measures should cover tactile function, joint movement and joint position and dynamic position sense, and spatial and structural body representation.None of the nine existing outcome measures fulfilled the core criteria: feasibility for clinical practice, child-friendliness, and relevance to motor function. Consensus was established for the categories and modalities of somatosensory function relevant for lower limb motor function of children with UMN lesion. Outcome measures should cover tactile function, joint movement and joint position and dynamic position sense, and spatial and structural body representation. None of the nine existing outcome measures fulfilled the core criteria: feasibility for clinical practice, child-friendliness, and relevance to motor function.
DOI: 10.6084/m9.figshare.20417549
title: Perceptions and experiences of control among people living with motor neurone disease: a systematic review and thematic synthesis

description: Current research suggests that feeling a lack of control is common among people living with Motor Neurone Disease (plwMND). This systematic review explores and synthesises evidence about: (1) What factors contribute towards perceptions of control in plwMND (2) How do plwMND attempt to maintain control in their daily lives? A systematic search from inception to January 2022 for peer-reviewed journal articles in English reporting qualitative and mixed-method primary studies or reviews of plwMND’s perceptions or experiences of control was conducted on CINAHL, MEDLINE, PsycINFO, ASSIA, Embase and AMED. Eligible articles underwent quality appraisal, data extraction and a thematic synthesis was carried out. Twenty publications, 19 primary studies and one review, from nine countries, reporting the views of 578 participants aged from 20 to 90 years were included. Two key analytical themes were identified (1) diagnosis can lead to a disruption of previously held control beliefs (2) plwMND use a range of control strategies to attempt to retain control in their lives. This is the first systematic review and qualitative evidence synthesis to reveal the strategies plwMND use to regain control and that control beliefs about health, fate, identity and bodily control are significantly altered by the diagnosis. Implications for rehabilitationOutcome measures for plwMND should consider personal values and preferences as well as objective clinical measurements.plwMND use a range of control strategies which may alter and change over time therefore healthcare professionals may also need to review and adapt treatment decisions over time.The differing viewpoints of healthcare professionals and plwMND should be considered in clinical situations to reduce the potential for conflict. Outcome measures for plwMND should consider personal values and preferences as well as objective clinical measurements. plwMND use a range of control strategies which may alter and change over time therefore healthcare professionals may also need to review and adapt treatment decisions over time. The differing viewpoints of healthcare professionals and plwMND should be considered in clinical situations to reduce the potential for conflict.
DOI: 10.6084/m9.figshare.20417549.v1
title: Perceptions and experiences of control among people living with motor neurone disease: a systematic review and thematic synthesis

description: Current research suggests that feeling a lack of control is common among people living with Motor Neurone Disease (plwMND). This systematic review explores and synthesises evidence about: (1) What factors contribute towards perceptions of control in plwMND (2) How do plwMND attempt to maintain control in their daily lives? A systematic search from inception to January 2022 for peer-reviewed journal articles in English reporting qualitative and mixed-method primary studies or reviews of plwMND’s perceptions or experiences of control was conducted on CINAHL, MEDLINE, PsycINFO, ASSIA, Embase and AMED. Eligible articles underwent quality appraisal, data extraction and a thematic synthesis was carried out. Twenty publications, 19 primary studies and one review, from nine countries, reporting the views of 578 participants aged from 20 to 90 years were included. Two key analytical themes were identified (1) diagnosis can lead to a disruption of previously held control beliefs (2) plwMND use a range of control strategies to attempt to retain control in their lives. This is the first systematic review and qualitative evidence synthesis to reveal the strategies plwMND use to regain control and that control beliefs about health, fate, identity and bodily control are significantly altered by the diagnosis. Implications for rehabilitationOutcome measures for plwMND should consider personal values and preferences as well as objective clinical measurements.plwMND use a range of control strategies which may alter and change over time therefore healthcare professionals may also need to review and adapt treatment decisions over time.The differing viewpoints of healthcare professionals and plwMND should be considered in clinical situations to reduce the potential for conflict. Outcome measures for plwMND should consider personal values and preferences as well as objective clinical measurements. plwMND use a range of control strategies which may alter and change over time therefore healthcare professionals may also need to review and adapt treatment decisions over time. The differing viewpoints of healthcare professionals and plwMND should be considered in clinical situations to reduce the potential for conflict.
DOI: 10.6084/m9.figshare.20443204
title: Inequity in exercise-based interventions for adults with intermittent claudication due to peripheral arterial disease: a systematic review

description: To determine the equity in access to trials of exercise interventions for adults with intermittent claudication due to peripheral arterial disease. Systematic electronic database searches of MEDLINE, Embase, CINAHL, Cochrane Central Register of Controlled Clinical Trials, PEDRO, Opengrey, ISRCTN and ClinincalTrials.gov for randomised controlled trials of exercise interventions for adults with intermittent claudication were conducted. Data extraction was informed by Cochrane’s PROGRESS-Plus framework. Searches identified 6412 records. Following the screening of 262 full texts, 49 trials including 3695 participants were included. All trials excluded potential participants on at least one equity factor. This comprised place of residence, language, sex, personal characteristics (e.g., age and disability), features of relationships (e.g., familial risk factors) and time-dependent factors, (e.g., time since revascularisation). Overall, 1839 of 7567 potential participants (24.3%) were excluded based on equity factors. Disability was the most frequently reported factor for exclusions. Trialists endeavour to enrol a representative sample in exercise trials whilst preserving the safety profile of the intervention. This review highlights that these efforts can inadvertently lead to inequities in access as all trials excluded potential participants on at least one equity factor. Future exercise trials should optimise participation to maximise generalisability of findings. PROSPERO registration no. CRD42020189965.Implications for rehabilitationEquity factors influence health opportunities and outcomes.All trials of exercise for people with intermittent claudication excluded adults on at least one equity factor.Disability was the predominant factor for exclusions from trials.Trials should optimise participation to maximise generalisability of results as these findings are used to inform treatment and service design. Equity factors influence health opportunities and outcomes. All trials of exercise for people with intermittent claudication excluded adults on at least one equity factor. Disability was the predominant factor for exclusions from trials. Trials should optimise participation to maximise generalisability of results as these findings are used to inform treatment and service design.
DOI: 10.6084/m9.figshare.20443204.v1
title: Inequity in exercise-based interventions for adults with intermittent claudication due to peripheral arterial disease: a systematic review

description: To determine the equity in access to trials of exercise interventions for adults with intermittent claudication due to peripheral arterial disease. Systematic electronic database searches of MEDLINE, Embase, CINAHL, Cochrane Central Register of Controlled Clinical Trials, PEDRO, Opengrey, ISRCTN and ClinincalTrials.gov for randomised controlled trials of exercise interventions for adults with intermittent claudication were conducted. Data extraction was informed by Cochrane’s PROGRESS-Plus framework. Searches identified 6412 records. Following the screening of 262 full texts, 49 trials including 3695 participants were included. All trials excluded potential participants on at least one equity factor. This comprised place of residence, language, sex, personal characteristics (e.g., age and disability), features of relationships (e.g., familial risk factors) and time-dependent factors, (e.g., time since revascularisation). Overall, 1839 of 7567 potential participants (24.3%) were excluded based on equity factors. Disability was the most frequently reported factor for exclusions. Trialists endeavour to enrol a representative sample in exercise trials whilst preserving the safety profile of the intervention. This review highlights that these efforts can inadvertently lead to inequities in access as all trials excluded potential participants on at least one equity factor. Future exercise trials should optimise participation to maximise generalisability of findings. PROSPERO registration no. CRD42020189965.Implications for rehabilitationEquity factors influence health opportunities and outcomes.All trials of exercise for people with intermittent claudication excluded adults on at least one equity factor.Disability was the predominant factor for exclusions from trials.Trials should optimise participation to maximise generalisability of results as these findings are used to inform treatment and service design. Equity factors influence health opportunities and outcomes. All trials of exercise for people with intermittent claudication excluded adults on at least one equity factor. Disability was the predominant factor for exclusions from trials. Trials should optimise participation to maximise generalisability of results as these findings are used to inform treatment and service design.
DOI: 10.6084/m9.figshare.20509036.v1
title: Group intervention programs and their impact on well-being and quality-of-life for adults living with a rare or orphan disease – realist review of literature

description: Adults living with a rare or orphan diseases (ROD) experience common psychosocial difficulties that are often poorly addressed in usual care. This realist literature review aims to inform the development, evaluation and implementation of evidence based group therapy programs adapted to shared needs of patients living with various ROD. The review is based on an analysis of Context-Mechanism-Outcome configurations. It included 21 primary studies published between 2010 and April 2022 and used a PRISMA process for study selection and inclusion. Our results show that group psychosocial interventions can help reduce perception of symptoms and psychological impacts of disease, improve social functioning and support and quality of life in patients. Group therapy programs seem promising for ROD-patients and should be considered within comprehensive treatment and support plans. However, more comprehensive studies of group therapies in context should aim to identify core active components of these interventions with ROD-patients. Implications for Rehabilitation:Rare or Orphan Diseases are varied, difficult to diagnose and have a major impact on all aspects of the patients’ lives (physical, emotional, psychological, social, professional).Psychosocial support is a key but underdeveloped component to support the recovery trajectory for these patients.In this review of group interventions, we identified a few promising practices adaptable to patients living with Rare or Orphan Diseases (Acceptance and commitment therapy, cognitive behavioural therapies, psychoeducational programs).Patients who received psychosocial group interventions are likely to experience improvement in their quality of life. Rare or Orphan Diseases are varied, difficult to diagnose and have a major impact on all aspects of the patients’ lives (physical, emotional, psychological, social, professional). Psychosocial support is a key but underdeveloped component to support the recovery trajectory for these patients. In this review of group interventions, we identified a few promising practices adaptable to patients living with Rare or Orphan Diseases (Acceptance and commitment therapy, cognitive behavioural therapies, psychoeducational programs). Patients who received psychosocial group interventions are likely to experience improvement in their quality of life.
DOI: 10.15472/t5qmas
title: Checklist of Mantodea from the Caribbean region of Colombia

description: This resource presents the checklist of the species from the orden Mantodea (Insecta) collected in the Caribbean region of Colombia, found during the revision of entomological collections in Colombia. In this checklist five families, 13 genera and 20 species are reported. This information was gathered from the following entomological collections in Colombia: Universidad del Atlántico, Puerto Colombia (UARC) and Universidad del Magdalena, Santa Marta (CBUMAG). For all species the distribution in the Caribbean departments was indicated.
DOI: 10.6084/m9.figshare.21841863.v3
title: Appendix 3. Herstoff et al. Copepod stoichiometry in a variable world. Size data from Brun et al 2016.xlsx

description: I used data from Brun et al. (2016)'s supplementary information, and calculated average total body length for copepod species within our analysis. <br> The first tab ("Body size from Brun et al. 2016) shows all raw data from the Brun et al. (2016) paper's supplementary dataset. <br> The second tab ("Data from Brun used in Herstoff") shows the raw data that we used in our paper for the average body size of marine copepods included within our study. <br> <br> The third tab ("References, Brun et al. 2016") shows the references from Brun et al. (2016) paper's supplementary dataset. <br> The forth tab (""Explanations, Brun et al. 2016") shows the information provided in Brun et al. (2016) paper's supplementary dataset. <br> A link to the Pangea page with Brun et al. (2016)'s supplementary dataset is included in the references below. <br> Last update: 9 January 2023.
DOI: 10.6084/m9.figshare.21841860.v3
title: Appendix 2. Herstoff et al. Copepod stoichiometry in a variable world. Raw data. 2 December. 2022.xlsx

description: All the raw data used in this analysis is included in this Excel file. <br> Last update: 9 January 2023.
DOI: 10.34740/kaggle/dsv/6150872
title: Balochi Language to English Translation Dataset
DOI: 10.15472/yvavif
title: Checklist of Spider (Arachnida: Araneae) in the Caribbean of Colombia

description: This resource presents a comprehensive list of spider species (Arachnida: Araneae) found in the Caribbean region of Colombia, which are housed in the prestigious arachnological and entomological collections of the University of Atlántico, the National Sciences Institute of the National University, and the renowned Alexander von Humboldt Institute. In total, 35 families, 79 genera, and 40 species belonging to the order Araneae have been documented.
DOI: 10.5281/zenodo.8157118
title: Natural history specimens collected and/or identified and deposited.

description: Natural history specimen data collected and/or identified by Jean Pierre Guépin, http://www.wikidata.org/entity/Q5928824. Claims or attributions were made on Bionomia, https://bionomia.net using specimen data from the Global Biodiversity Information Facility, https://gbif.org.
description: http://www.wikidata.org/entity/Q5928824
DOI: 10.5281/zenodo.8157117
title: Natural history specimens collected and/or identified and deposited.

description: Natural history specimen data collected and/or identified by Jean Pierre Guépin, http://www.wikidata.org/entity/Q5928824. Claims or attributions were made on Bionomia, https://bionomia.net using specimen data from the Global Biodiversity Information Facility, https://gbif.org.
description: http://www.wikidata.org/entity/Q5928824