The challenge of the work presented here is to make innovative research output in the agronomy an... more The challenge of the work presented here is to make innovative research output in the agronomy and forestry domain accessible to end-users, so that it can be practically applied. We have developed an approach that consists of three key-elements: an ontology with domain knowledge, a set of documents that have been annotated and meta-annotated, and a system (ask-Valerie) that is based on a dialogue to represent the interaction between end user and system. We show that the dialogue-metaphor is a good way of modelling the interaction between user and system. The system helps the user in formulating his question and in answering it in a useful way. Meta-annotations of key-paragraphs in the document-base turn out to be relevant in assessing in one glance what the content of a document is. End-users are very enthusiastic about the possibilities that ask-Valerie offers them in translating scientific results to their own situation.
Agriculture, Ecosystems & Environment, Oct 1, 2012
a b s t r a c t Agricultural intensification has contributed to severe declines in odonate (drago... more a b s t r a c t Agricultural intensification has contributed to severe declines in odonate (dragonfly and damselfly) populations. Odonates require healthy waterbodies for their larval stages and resource-rich terrestrial landscapes as adults. As such, farmland management at both local and larger landscape scales may be needed to reverse population declines. We sampled odonate adults and exuviae from lowland farmland ponds in England, to investigate relationships between odonate species richness and surrounding land-use. The more mobile dragon- flies (Anisoptera) were influenced most strongly by landscape variables at the largest scale (i.e. 1600 m radius), while less mobile damselflies (Zygoptera) were affected by variables at more local scales (i.e. 100/400 m radii). A greater number of landscape variables affected exuvial species richness compared to adult species richness. Exuvial species richness was higher when 2 m wide cross-compliance buffer strips around ponds were present. However, no ponds in the study had buffer strips that were estab- lished through England's basic agri-environment scheme (Entry Level Scheme: ELS) agreements, and we observed a negative relationship between ELS area and exuvial species richness. Exuvial species richness increased with the amount of water, but not the number of ponds, in the landscape surround- ing a focal pond. The observed odonate responses to local and surrounding land-use lend support to the development of agri-environment scheme policies that encourage landscape-scale, as well as local, scheme implementation and management. We predict that both landscape-scale and quality-targeted management of farmland ponds would benefit odonates, irrespective of mobility level and life-stage.
Odonate populations and species numbers are declining globally. Successful conservation requires ... more Odonate populations and species numbers are declining globally. Successful conservation requires sound assessments of both odonate distributions and habitat requirements. Odonates have aquatic (larval) and terrestrial (adult) stages, but most surveys that are used to inform conservation managers are undertaken of the adult stage. This study investigates whether this bias towards adult records in odonate recording is misinterpreting the environmental
Background Alpha-mannosidosis is a rare autosomal recessive lysosomal storage disorder (LSD) caus... more Background Alpha-mannosidosis is a rare autosomal recessive lysosomal storage disorder (LSD) caused by reduced activity of alpha-mannosidase. Clinical manifestations include skeletal dysmorphism, mental impairment, hearing loss and recurrent infections. The severe type of the disease leads to early childhood death, while patients with milder forms can live into adulthood. There are no mortality studies to date. This study aimed to investigate the age at death and the causes of death of patients with alpha-mannosidosis who had not received disease-modifying treatment. Methods Clinicians and LSD patient organisations (POs) from 33 countries were invited to complete a questionnaire between April–May 2021. Cause of death and age at death was available for 15 patients. A literature review identified seven deceased patients that met the inclusion criteria. Results Median age at death for patients reported by clinicians/POs was 45 years (mean 40.3 ± 13.2, range 18–56, n = 15); 53% were fem...
Background Cerliponase alfa, an enzyme replacement therapy for neuronal ceroid lipofuscinosis typ... more Background Cerliponase alfa, an enzyme replacement therapy for neuronal ceroid lipofuscinosis type 2 (CLN2), is currently available in England through a managed access agreement (MAA). It is administered every 2 weeks via an intracerebroventricular device. Here we report qualitative research with families of children with CLN2 disease and healthcare professionals (HCPs) who run the MAA, to understand how access to cerliponase alfa via the MAA at Great Ormond Street Hospital (GOSH) in London, and the overall management of CLN2 disease, was affected during the coronavirus disease 2019 (COVID-19) pandemic. Methods Telephone interviews were conducted with nine families, representing 11 children with CLN2 disease, and two HCPs in November and December 2020. Results Children had received cerliponase alfa treatment for a mean (SD) of 23.1 ± 24.7 months (7.1 ± 4.6 months in the MAA). Families travelled 7–398 km for treatment (mean 210 ± 111 km). Treatment with cerliponase alfa was designate...
BACKGROUND Asthma is a chronic disease requiring effective self-management to control it and prev... more BACKGROUND Asthma is a chronic disease requiring effective self-management to control it and prevent mortality. The use of theory-informed digital interventions promoting asthma self-management is increasing. However, there is limited knowledge concerning how and to what extent psychological theory has been applied to the development of digital interventions, or how using theory impacts outcomes. OBJECTIVE The study aimed to examine the use and application of theory in the development of digital interventions to enhance asthma self-management and to evaluate the effectiveness of theory-based interventions in improving adherence, self-management, and clinical outcomes. METHODS Electronic databases (CENTRAL, MEDLINE, EMBASE, and PsycINFO) were searched systematically using predetermined terms. Additional studies were identified by scanning references within relevant studies. Two researchers screened titles and abstracts against predefined inclusion criteria; a third resolved discrepan...
Non-adherence to asthma treatment is a contributing factor for poorly controlled asthma. The aim ... more Non-adherence to asthma treatment is a contributing factor for poorly controlled asthma. The aim of this systematic review is to explore patients' perceptions of their inhaled asthma treatment, and how these relate to adherence, using both qualitative and quantitative data. Pre-determined search terms and inclusion criteria were used to search electronic databases (The Cochrane Library, MEDLINE, EMBASE and PsycINFO). Two researchers screened titles and abstracts using the Rayyan web app and data were extracted in relation to psychological components (beliefs about, and attitudes towards, medicines) and adherence. Of 1638 papers, 36 met the inclusion criteria. Key themes were: Perceived need for treatment - all 12 studies using the BMQ to measure patients' perceived need for treatment found that patients' beliefs about their necessity for treatment were associated with adherence-; Concerns about treatment - immediate and long-term side effects (58%), worries about safety ...
The challenge of the work presented here is to make innovative research output in the agronomy an... more The challenge of the work presented here is to make innovative research output in the agronomy and forestry domain accessible to end-users, so that it can be practically applied. We have developed an approach that consists of three key-elements: an ontology with domain knowledge, a set of documents that have been annotated and meta-annotated, and a system (ask-Valerie) that is based on a dialogue to represent the interaction between end user and system. We show that the dialogue-metaphor is a good way of modelling the interaction between user and system. The system helps the user in formulating his question and in answering it in a useful way. Meta-annotations of key-paragraphs in the document-base turn out to be relevant in assessing in one glance what the content of a document is. End-users are very enthusiastic about the possibilities that ask-Valerie offers them in translating scientific results to their own situation.
Odonate populations and species numbers are declining globally. Successful conservation requires ... more Odonate populations and species numbers are declining globally. Successful conservation requires sound assessments of both odonate distributions and habitat requirements. Odonates have aquatic (larval) and terrestrial (adult) stages, but most surveys that are used to inform conservation managers are undertaken of the adult stage. This study investigates whether this bias towards adult records in odonate recording is misinterpreting the environmental
The challenge of the work presented here is to make innovative research output in the agronomy an... more The challenge of the work presented here is to make innovative research output in the agronomy and forestry domain accessible to end-users, so that it can be practically applied. We have developed an approach that consists of three key-elements: an ontology with domain knowledge, a set of documents that have been annotated and meta-annotated, and a system (ask-Valerie) that is based on a dialogue to represent the interaction between end user and system. We show that the dialogue-metaphor is a good way of modelling the interaction between user and system. The system helps the user in formulating his question and in answering it in a useful way. Meta-annotations of key-paragraphs in the document-base turn out to be relevant in assessing in one glance what the content of a document is. End-users are very enthusiastic about the possibilities that ask-Valerie offers them in translating scientific results to their own situation.
Agriculture, Ecosystems & Environment, Oct 1, 2012
a b s t r a c t Agricultural intensification has contributed to severe declines in odonate (drago... more a b s t r a c t Agricultural intensification has contributed to severe declines in odonate (dragonfly and damselfly) populations. Odonates require healthy waterbodies for their larval stages and resource-rich terrestrial landscapes as adults. As such, farmland management at both local and larger landscape scales may be needed to reverse population declines. We sampled odonate adults and exuviae from lowland farmland ponds in England, to investigate relationships between odonate species richness and surrounding land-use. The more mobile dragon- flies (Anisoptera) were influenced most strongly by landscape variables at the largest scale (i.e. 1600 m radius), while less mobile damselflies (Zygoptera) were affected by variables at more local scales (i.e. 100/400 m radii). A greater number of landscape variables affected exuvial species richness compared to adult species richness. Exuvial species richness was higher when 2 m wide cross-compliance buffer strips around ponds were present. However, no ponds in the study had buffer strips that were estab- lished through England's basic agri-environment scheme (Entry Level Scheme: ELS) agreements, and we observed a negative relationship between ELS area and exuvial species richness. Exuvial species richness increased with the amount of water, but not the number of ponds, in the landscape surround- ing a focal pond. The observed odonate responses to local and surrounding land-use lend support to the development of agri-environment scheme policies that encourage landscape-scale, as well as local, scheme implementation and management. We predict that both landscape-scale and quality-targeted management of farmland ponds would benefit odonates, irrespective of mobility level and life-stage.
Odonate populations and species numbers are declining globally. Successful conservation requires ... more Odonate populations and species numbers are declining globally. Successful conservation requires sound assessments of both odonate distributions and habitat requirements. Odonates have aquatic (larval) and terrestrial (adult) stages, but most surveys that are used to inform conservation managers are undertaken of the adult stage. This study investigates whether this bias towards adult records in odonate recording is misinterpreting the environmental
Background Alpha-mannosidosis is a rare autosomal recessive lysosomal storage disorder (LSD) caus... more Background Alpha-mannosidosis is a rare autosomal recessive lysosomal storage disorder (LSD) caused by reduced activity of alpha-mannosidase. Clinical manifestations include skeletal dysmorphism, mental impairment, hearing loss and recurrent infections. The severe type of the disease leads to early childhood death, while patients with milder forms can live into adulthood. There are no mortality studies to date. This study aimed to investigate the age at death and the causes of death of patients with alpha-mannosidosis who had not received disease-modifying treatment. Methods Clinicians and LSD patient organisations (POs) from 33 countries were invited to complete a questionnaire between April–May 2021. Cause of death and age at death was available for 15 patients. A literature review identified seven deceased patients that met the inclusion criteria. Results Median age at death for patients reported by clinicians/POs was 45 years (mean 40.3 ± 13.2, range 18–56, n = 15); 53% were fem...
Background Cerliponase alfa, an enzyme replacement therapy for neuronal ceroid lipofuscinosis typ... more Background Cerliponase alfa, an enzyme replacement therapy for neuronal ceroid lipofuscinosis type 2 (CLN2), is currently available in England through a managed access agreement (MAA). It is administered every 2 weeks via an intracerebroventricular device. Here we report qualitative research with families of children with CLN2 disease and healthcare professionals (HCPs) who run the MAA, to understand how access to cerliponase alfa via the MAA at Great Ormond Street Hospital (GOSH) in London, and the overall management of CLN2 disease, was affected during the coronavirus disease 2019 (COVID-19) pandemic. Methods Telephone interviews were conducted with nine families, representing 11 children with CLN2 disease, and two HCPs in November and December 2020. Results Children had received cerliponase alfa treatment for a mean (SD) of 23.1 ± 24.7 months (7.1 ± 4.6 months in the MAA). Families travelled 7–398 km for treatment (mean 210 ± 111 km). Treatment with cerliponase alfa was designate...
BACKGROUND Asthma is a chronic disease requiring effective self-management to control it and prev... more BACKGROUND Asthma is a chronic disease requiring effective self-management to control it and prevent mortality. The use of theory-informed digital interventions promoting asthma self-management is increasing. However, there is limited knowledge concerning how and to what extent psychological theory has been applied to the development of digital interventions, or how using theory impacts outcomes. OBJECTIVE The study aimed to examine the use and application of theory in the development of digital interventions to enhance asthma self-management and to evaluate the effectiveness of theory-based interventions in improving adherence, self-management, and clinical outcomes. METHODS Electronic databases (CENTRAL, MEDLINE, EMBASE, and PsycINFO) were searched systematically using predetermined terms. Additional studies were identified by scanning references within relevant studies. Two researchers screened titles and abstracts against predefined inclusion criteria; a third resolved discrepan...
Non-adherence to asthma treatment is a contributing factor for poorly controlled asthma. The aim ... more Non-adherence to asthma treatment is a contributing factor for poorly controlled asthma. The aim of this systematic review is to explore patients' perceptions of their inhaled asthma treatment, and how these relate to adherence, using both qualitative and quantitative data. Pre-determined search terms and inclusion criteria were used to search electronic databases (The Cochrane Library, MEDLINE, EMBASE and PsycINFO). Two researchers screened titles and abstracts using the Rayyan web app and data were extracted in relation to psychological components (beliefs about, and attitudes towards, medicines) and adherence. Of 1638 papers, 36 met the inclusion criteria. Key themes were: Perceived need for treatment - all 12 studies using the BMQ to measure patients' perceived need for treatment found that patients' beliefs about their necessity for treatment were associated with adherence-; Concerns about treatment - immediate and long-term side effects (58%), worries about safety ...
The challenge of the work presented here is to make innovative research output in the agronomy an... more The challenge of the work presented here is to make innovative research output in the agronomy and forestry domain accessible to end-users, so that it can be practically applied. We have developed an approach that consists of three key-elements: an ontology with domain knowledge, a set of documents that have been annotated and meta-annotated, and a system (ask-Valerie) that is based on a dialogue to represent the interaction between end user and system. We show that the dialogue-metaphor is a good way of modelling the interaction between user and system. The system helps the user in formulating his question and in answering it in a useful way. Meta-annotations of key-paragraphs in the document-base turn out to be relevant in assessing in one glance what the content of a document is. End-users are very enthusiastic about the possibilities that ask-Valerie offers them in translating scientific results to their own situation.
Odonate populations and species numbers are declining globally. Successful conservation requires ... more Odonate populations and species numbers are declining globally. Successful conservation requires sound assessments of both odonate distributions and habitat requirements. Odonates have aquatic (larval) and terrestrial (adult) stages, but most surveys that are used to inform conservation managers are undertaken of the adult stage. This study investigates whether this bias towards adult records in odonate recording is misinterpreting the environmental
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