26 results on '"Edis, Robert"'
Search Results
2. Sudden leg weakness: Where is the problem? What is the cause?
- Author
-
WAI-KUEN LEONG and EDIS, ROBERT H.
- Subjects
- *
LEG pain , *COMPLEX regional pain syndromes , *VOCAL cord dysfunction , *EXTRAMEDULLARY diseases , *NEUROLOGIC examination , *NEUROMUSCULAR diseases , *SPINAL cord diseases - Abstract
The article focuses on the urgent assessment and management of sudden weakness in the legs. Topics discussed include the importance of history-taking, examination, and the need for emergent referral and management in cases of acute spinal cord compression, as well as other causes of acute ascending paralysis.
- Published
- 2023
3. Soil management and crop nutrition: Myanmar mohinga
- Author
-
Herridge, David, Simmanivong, Dulce Carandang, and Edis, Robert
- Published
- 2017
4. Performance of open-path lasers and Fourier transform infrared spectroscopic systems in agriculture emissions research.
- Author
-
Bai, Mei, Loh, Zoe, Griffith, David W. T., Turner, Debra, Eckard, Richard, Edis, Robert, Denmead, Owen T., Bryant, Glenn W., Paton-Walsh, Clare, Tonini, Matthew, McGinn, Sean M., and Chen, Deli
- Subjects
FOURIER transforms ,TRACE gases ,AGRICULTURAL research ,MOLE fraction ,GREENHOUSE gases ,INFRARED lasers - Abstract
The accumulation of gases into our atmosphere is a growing global concern that requires considerable quantification of the emission rates to mitigate the accumulation of gases in the atmosphere, especially the greenhouse gases (GHGs). In agriculture there are many sources of GHGs that require attention in order to develop practical mitigation strategies. Measuring these GHG sources often relies on highly technical instrumentation originally designed for applications outside of the emissions research in agriculture. Although the open-path laser (OPL) and open-path Fourier transform infrared (OP-FTIR) spectroscopic techniques are used in agricultural research currently, insight into their contributing error to emissions research has not been the focus of these studies. The objective of this study was to assess the applicability and performance (accuracy and precision) of OPL and OP-FTIR spectroscopic techniques for measuring gas mole fractions from agricultural sources. We measured the mole fractions of trace gases methane (CH 4), nitrous oxide (N 2 O), and ammonia (NH 3), downwind of point and area sources with a known release rate. The mole fractions measured by OP-FTIR and OPL were also input into models of atmospheric dispersion (WindTrax) allowing the calculation of fluxes. Trace gas release recoveries with WindTrax were examined by comparing the ratio of estimated and known fluxes. The OP-FTIR provided the best performance regarding stability of drift in stable conditions. The CH 4 OPL accurately detected the low background (free-air) level of CH 4 ; however, the NH 3 OPL was unable to detect the background values <10 ppbv. The dispersion modelling using WindTrax coupled with open-path measurements can be a useful tool to calculate trace gas fluxes from the well-defined source area. [ABSTRACT FROM AUTHOR]
- Published
- 2022
- Full Text
- View/download PDF
5. Performance of open-path lasers and FTIR spectroscopic systems in agriculture emissions research.
- Author
-
Bai, Mei, Loh, Zoe, Griffith, David W. T., Turner, Debra, Eckard, Richard, Edis, Robert, Denmead, Owen T., Bryant, Glenn W., Paton-Walsh, Clare, Tonini, Matthew, McGinn, Sean M., and Chen, Deli
- Subjects
AGRICULTURAL research ,TRACE gases ,GREENHOUSE gases ,NITROUS oxide ,FOURIER transforms - Abstract
The accumulation of gases into our atmosphere is a growing global concern that requires considerable quantification of the emission rates and mitigate the accumulation of gases in the atmosphere, especially the greenhouse gases (GHG). In agriculture there are many sources of GHG that require attention in order to develop practical mitigation strategies. Measuring these GHG sources often rely on highly technical instrumentation originally designed for applications outside of the emissions research in agriculture. Although the open-path laser (OPL) and open-path Fourier transform infrared (OP-FTIR) spectroscopic techniques are used in agricultural research currently, insight into their contributing error to emissions research has not been the focus of these studies. The objective of this study was to assess the applicability and performance (accuracy and precision) of OPL and OP-FTIR spectroscopic techniques for measuring gas concentration from agricultural sources. We measured the mixing ratios of trace gases methane (CH
4 ), nitrous oxide (N2 O), and ammonia (NH3 ), downwind of point and area sources with known release rates. The OP-FTIR provided the best performance regarding stability of drift in stable conditions. The CH4 OPL accurately detected the low background (free-air) level of CH4 ; however, the NH3 OPL was unable to detect the background values < 10 ppbv. [ABSTRACT FROM AUTHOR]- Published
- 2022
- Full Text
- View/download PDF
6. Why and how the work of Motor Neurone Disease Associations matters before and during bereavement: a consumer perspective.
- Author
-
Aoun, Samar M., Cafarella, Paul A., Hogden, Anne, Thomas, Geoff, Jiang, Leanne, and Edis, Robert
- Subjects
CAREGIVER attitudes ,SOCIAL support ,EMPATHY ,MATHEMATICAL models ,RESEARCH methodology ,MOTOR neuron diseases ,MEDICAL care ,EXPERIENCE ,PATIENTS' attitudes ,COMPASSION ,QUALITY assurance ,THEORY ,RESEARCH funding ,BEREAVEMENT - Abstract
Background: Studies on the experiences of consumers with Motor Neurone Disease Associations at end of life and bereavement are lacking, and their role and capability within the broader sectors of health and disability are unknown. Objectives: To ascertain the experiences and views of bereaved motor neurone disease caregivers with Motor Neurone Disease Associations about service gaps and needed improvements before and during bereavement and to propose a model of care that fits with consumer preferences and where Motor Neurone Disease Associations are effective enablers of care. Methods: A national bereavement survey was facilitated in 2019 by all Motor Neurone Disease Associations in Australia. A total of 363 respondents completed the section on support provided by Motor Neurone Disease Associations. A mixed-method design was used. Results: Respondents were generally positive about support received before bereavement (73-76%), except for emotional support (55%). Positive experiences related to the following: information, equipment advice/provision, advocacy/linking to services, showing empathy/understanding, personal contact and peer social support. Negative experiences included lack of continuity in case management and contact, perceived lack of competence or training, lack of emotional support and a lack of access to motor neurone disease services in rural areas. Suggested improvements were as follows: more contact and compassion at end of life and postdeath; better preparation for end of life; option of discussing euthanasia; providing referrals and links for counseling; access to caregiver support groups and peer interaction; provision of a genuine continuum of care rather than postdeath abandonment; guidance regarding postdeath practicalities; and more access to bereavement support in rural areas. Conclusion: This study provides consumer perspectives on driving new or improved initiatives by Motor Neurone Disease Associations and the need for a national standardised approach to training and service delivery, based on research evidence. A public health approach to motor neurone disease end-of-life care, of international applicability, is proposed to address the needs and preferences of motor neurone disease consumers, while supporting the capability of Motor Neurone Disease Associations within a multidisciplinary workforce to deliver that care. [ABSTRACT FROM AUTHOR]
- Published
- 2021
- Full Text
- View/download PDF
7. Journal of the Society for Arts, Vol. 28, no. 1453
- Author
-
Edis, Robert W.
- Published
- 1880
8. Journal of the Society for Arts, Vol. 28, no. 1454
- Author
-
Wood, H. Trueman and Edis, Robert W.
- Published
- 1880
9. Journal of the Society for Arts, Vol. 32, no. 1661
- Author
-
Edis, Robert W. and Burton, W. K.
- Published
- 1884
10. THE VICTORIA HOUSE, CHICAGO
- Author
-
EDIS, ROBERT W.
- Published
- 1893
11. Art Applied to Decoration and Furniture of Modern Houses
- Author
-
Edis, Robert W.
- Published
- 1882
- Full Text
- View/download PDF
12. Walls and Ceilings from Well-Known Authors
- Author
-
Edis, Robert W.
- Published
- 1883
- Full Text
- View/download PDF
13. Receiving the news of a diagnosis of motor neuron disease: What does it take to make it better?
- Author
-
Aoun, Samar M, Breen, Lauren J, Howting, Denise, Edis, Robert, Oliver, David, Henderson, Robert, O'Connor, Margaret, Harris, Rodney, and Birks, Carol
- Subjects
MOTOR neuron diseases ,AMYOTROPHIC lateral sclerosis ,NEURODEGENERATION ,NEUROLOGISTS ,MEDICAL protocols ,DIAGNOSIS - Abstract
Our objectives were to identify the experiences of people with MND in receiving the diagnosis and to determine which aspects of breaking this bad news were associated with greater satisfaction with the way the diagnosis was delivered to them. An anonymous postal survey was facilitated by all MND associations in Australia, in 2014, and centred on the SPIKES protocol for communicating bad news. Of the patients (n = 248, response rate 29%), 36% were dissatisfied with the delivery of the diagnosis and gave low ratings on the ability/skills of their neurologists to deliver the diagnosis. It was evident that the longer the patients spent with their neurologists during breaking such bad news, the more they were satisfied and the higher they rated the neurologists’ abilities/skills. The largest significant differences between neurologists rated as having high or low skills in delivering the diagnosis were in four domains: 1) responding empathically to the feelings of patient/family; 2) sharing the information and suggesting realistic goals; 3) exploring what patient/family are expecting or hoping for; and 4) making a plan and following through. In conclusion, with over one-third of patients dissatisfied with their experience, there is room for improvement in the practice of neurologists in specified areas that could form the basis for changing practice, and the development of standards and protocols likely to have implications at the international level. [ABSTRACT FROM PUBLISHER]
- Published
- 2016
- Full Text
- View/download PDF
14. Chemically Stabilized Clay Contaminated Biosolids as Compacted Landfill Liners.
- Author
-
Goonewardena, Lakshika, Wrigley, Roger, Edis, Robert, and Dassanayake, Kithsiri
- Abstract
The landfill liners which protect the underlying soil and groundwater are normally made up of compacted clay or geosynthetic materials. These are expensive and also associated with number of shortcomings. Therefore, investigations on alternative liner material are important to prevent land and groundwater contaminations due to land filling.A series of laboratory tests (index properties, linear shrinkage characteristics, cation ex-change capacity, compaction characteristics, and hydraulic conductivity) were conducted on biosolids to assess whether they could be compacted as hydraulic barriers in waste disposal landfills. The hydraulic conductivity requirement was not satisfied although the rest of the properties were at acceptable level. Therefore, the second phase of study was aimed in investigating how hydraulic properties of biosolids could be modified through chemical means.The second phase of study revealed that chemically stabilized biosolids have improved physical properties compared to untreated biosolids. The addition of 4% of cement, bentonite and 12% lime was found to be sufficient to achieve the desired level of saturated hydraulic conductivity.Findings suggest that the stabilized biosolid admixtures with lime, cement and bentonite could be potentially used in place of clay and geosynthetic materials as effective and low cost compacted landfill liner material for reducing the leachate. [ABSTRACT FROM AUTHOR]
- Published
- 2012
- Full Text
- View/download PDF
15. Modeling Nitrate Leaching and Optimizing Water and Nitrogen Management under Irrigated Maize in Desert Oases in Northwestern China.
- Author
-
Hu, Kelin, Yong Li, Weiping Chen, Deli Chen, Yongping Wei, Edis, Robert, Baoguo Li, Yuanfang Huang, and Yuanpei Zhang
- Subjects
SOIL leaching ,SOIL degradation ,SOIL percolation ,SOIL profiles ,ENVIRONMENTAL management ,WATER in agriculture ,AGRICULTURAL development ,ENVIRONMENTAL engineering - Abstract
The article presents a study on reducing nitrate leaching while maximizing water and nitrogen management under desert oasis conditions in northwestern China. It stresses the importance in understanding water and nitrogen transport in soil profile for efficient irrigation and nutrient management for agricultural sustainable development in desert oases. The study aims to implement the water and nitrogen management model (WNMM) to induce the water movement, nitrate transport, and crop growth. Moreover, it details the methods and materials used in the study and explores the results of the study.
- Published
- 2010
- Full Text
- View/download PDF
16. Comparison of three modeling approaches for simulating denitrification and nitrous oxide emissions from loam-textured arable soils.
- Author
-
Yong Li, Deli Chen, Yuming Zhang, Edis, Robert, and Hong Ding
- Subjects
DENITRIFICATION ,NITROUS oxide ,SOIL moisture ,LOAM soils - Abstract
Soil denitrification fluxes and nitrous oxide (N
2 O) emissions from the soil surface simulated by a Water and Nitrogen Management Model (WNMM), with three different gas modules, are compared to measurement data sets from two irrigated wheat-maize systems at two locations in the North China Plain (NCP) (2 years of measurement at the Luancheng site and 1 year of measurement at the Fengqiu site). The three gas modules are the WNMM gas module, the DAYCENT gas module, and the DNDC gas module. The term gas module used in this paper refers to the model component which simulates N2 O emission from the processes of soil nitrification and denitrification. Soil water, temperature, organic matter decomposition, other nitrogen (N) transformations, such as mineralization and immobilization, and crop growth are simulated by the WNMM platform. For the 2-year data set from Luancheng, the three gas modules generate similar soil mineral N dynamics in the 0-20 cm topsoil. The daily time step, simply structured WNMM gas module consistently performs the best among the three gas modules for predicting soil denitrification fluxes (R² = 0.28, n = 39, p = 0.0006) and N2 O emissions (R² = 0.45, n = 36, p < 0.0001). Up to 73, 43, and 22% of total N2 O emissions are nitrification-induced as simulated by the DNDC, DAYCENT, and WNMM gas modules respectively, in this well-drained loam soil during the 2-year simulation. When applied to the 1-year data set at the Fengqiu site, the WNMM gas module consistently performs better in estimating N2 O emissions (R² = 0.54, n = 35, p < 0.0001) compared to the other two modules. Simulations using the DNDC and DAYCENT gas modules explain over 40% of the temporal variation of N2 O emission from the soil. Further testing on different soils and different agroecosystems is needed to confirm the superior performance of the WNMM gas module observed in this simulation study. [ABSTRACT FROM AUTHOR]- Published
- 2005
- Full Text
- View/download PDF
17. Necrotizing inflammatory myopathy associated with localized scleroderma.
- Author
-
Dunne, John W., Heye, Norbert, Edis, Robert H., Kakulas, Byron A., Dunne, J W, Heye, N, Edis, R H, and Kakulas, B A
- Published
- 1996
- Full Text
- View/download PDF
18. Loss of facial sweating and flushing in Holmes-Adie syndrome.
- Author
-
Drummond, Peter D., Edis, Robert H., Drummond, P D, and Edis, R H
- Published
- 1990
- Full Text
- View/download PDF
19. Syphilitic perioptic neuritis mimicking papilloedema.
- Author
-
Low, Grace S. H. and Edis, Robert H.
- Abstract
A letter to the editor is presented which describes an unusual case of syphilis with perioptic neuritis that appeared like papilloedema.
- Published
- 2009
- Full Text
- View/download PDF
20. Breaking the news of a diagnosis of motor neurone disease: A national survey of neurologists' perspectives.
- Author
-
Aoun, Samar M., Breen, Lauren J., Edis, Robert, Henderson, Robert D., Oliver, David, Harris, Rodney, Howting, Denise, O'Connor, Margaret, and Birks, Carol
- Subjects
- *
MOTOR neuron diseases , *NEUROLOGISTS , *MEDICAL personnel training , *MEDICAL protocols , *MEDICAL communication , *DIAGNOSIS - Abstract
Communication of the diagnosis of MND is daunting for patients and neurologists. This study aimed to establish a knowledge base of current Australian practice of breaking the news of an MND diagnosis, to assess the neurologists' educational and training needs and to compare the feedback obtained from neurologists and patients to international practice guidelines. An anonymous survey of neurologists was undertaken in Australia (2014). 73 neurologists responded to this national survey (50.4% response rate). Nearly 70% of neurologists reported finding it “somewhat to very difficult” communicating the MND diagnosis, and 65% reported feeling moderate to high stress and anxiety at the delivery of diagnosis. Compared to international guidelines, areas for improvement include length of consultation, period of follow up and referral to MND associations. Two-thirds of neurologists were interested in further training to respond to patient's emotions and development of best practice guidelines. This is the first national study to provide a comprehensive insight into the process of delivering the MND diagnosis from the neurologists' perspective and to make comparisons with those of patients and the international guidelines. This study forms the basis for developing protocols to improve communication skills and alleviate the emotional burden associated with breaking bad news. [ABSTRACT FROM AUTHOR]
- Published
- 2016
- Full Text
- View/download PDF
21. Rare earth element trends and cerium-uranium-manganese associations in weathered rock from Koongarra, Northern Territory, Australia
- Author
-
Koppi, Anthony J., Edis, Robert, Field, Damien J., Geering, Harold R., Klessa, David A., and Cockayne, David J.H.
- Published
- 1996
- Full Text
- View/download PDF
22. Family carers' experiences of receiving the news of a diagnosis of Motor Neurone Disease: A national survey.
- Author
-
Aoun, Samar M, Breen, Lauren J, Oliver, David, Henderson, Robert D, Edis, Robert, O'Connor, Margaret, Howting, Denise, Harris, Rodney, and Birks, Carol
- Subjects
- *
AMYOTROPHIC lateral sclerosis , *CAREGIVERS , *PATIENT satisfaction , *NEUROLOGISTS , *MEDICAL informatics , *DIAGNOSIS - Abstract
Family carers have a central role in the care and support of people with MND and face the challenges of the disease from diagnosis to progression and the multiple losses of MND, but their support needs are often neglected. This study aimed to investigate the experiences of family carers at the time of diagnosis and their satisfaction with receiving the news. An anonymous postal survey was facilitated by all MND Associations in Australia (2014) and 190 family carers completed the questionnaire. The questions centred on the SPIKES protocol for communicating bad news. Two-thirds of family carers rated the skills of their neurologists as above average and were satisfied with the delivery of the diagnosis, in terms of having a significantly longer consultation time, the neurologist being warm and caring, satisfaction with the amount and content of information they received and relevant supports, and a plan for following up support. Conversely those who rated the neurologist's skills as below average commented on the difficulties they encountered and the long term emotional stress engendered by poor communication. The study emphasises previous research that suggested that neurologists may require education and training in communicating the diagnosis and this should include family carers as a vital member in MND care. [ABSTRACT FROM AUTHOR]
- Published
- 2017
- Full Text
- View/download PDF
23. Influence of nitrification inhibitors on nitrification and nitrous oxide (N2O) emission from a clay loam soil fertilized with urea
- Author
-
Chen, Deli, Suter, Helen C., Islam, Arshad, and Edis, Robert
- Subjects
- *
NITRIFICATION inhibitors , *SOIL fertility , *UREA , *NITROGEN in soils , *NITROUS oxide , *SOIL moisture , *SOIL temperature - Abstract
Abstract: Laboratory incubation experiments were conducted to compare the effects of the nitrification inhibitors 3,4-dimethylpyrazole phosphate (DMPP) and 2-Chloro-6-(trichloromethyl)-pyridine (N-serve) on nitrification and nitrous oxide (N2O) emission from a Vertosol from southern Australia, under controlled moisture and temperature. Nitrification rates in the control soil were strongly influenced by the temperature and moisture, increasing by a factor of 3.6 for each 10 °C increase between 5 and 25 °C. DMPP inhibited nitrification effectively for 42 days at 5–15 °C and 40–60% water filled pore space (WFPS). DMPP also slowed nitrification appreciably at 25 °C when the soil was at 40% WFPS, but was less effective at 60% water filled pore space. N-serve inhibited nitrification effectively for 42 days under all test conditions. Emissions of N2O from the urea treatment (no inhibitors) significantly increased with increasing temperature and moisture. The ratio of total N2O emission to total nitrification was not constant and varied from around 0.03% at 5 °C and 40% WFPS to 0.12% at 25 °C and 60% WFPS. DMPP and N-serve reduced cumulative N2O emission over 42 days by more than 65% under all the imposed conditions. [Copyright &y& Elsevier]
- Published
- 2010
- Full Text
- View/download PDF
24. Simulation of nitrate leaching under irrigated maize on sandy soil in desert oasis in Inner Mongolia, China
- Author
-
Hu, Kelin, Li, Baoguo, Chen, Deli, Zhang, Yuanpei, and Edis, Robert
- Subjects
- *
HYDRAULIC engineering , *WATER in agriculture , *DENITRIFYING bacteria - Abstract
Abstract: Water scarcity and nitrate contamination in groundwater are serious problems in desert oases in Northwest China. Field and 15N microplot experiments with traditional and improved water and nitrogen management were conducted in a desert oasis in Inner Mongolia Autonomous Region. Water movement, nitrogen transport and crop growth were simulated by the soil–plant system with water and solute transport model (SPWS). The model simulation results, including the water content and nitrate concentration in the soil profile, leaf area index, dry matter weight, crop N uptake and grain yield, were all in good agreement with the field measurements. The water and nitrogen use efficiency of the improved treatment were better than those of the traditional treatment. The water and nitrogen use efficiency under the traditional treatment were 2.0kgm−3 and 21kgkg−1, respectively, while under the improved treatment, they were 2.2kgm−3 and 26kgkg−1, respectively. Water drainage accounted for 24–35% of total water input (rainfall and irrigation) for the two treatments. Nitrogen loss by ammonia volatilization and denitrification was less than 5% of the total N input (including the N comes from irrigation). However, 32–61% of total nitrogen input was lost through nitrate leaching, which agreed with the 15N isotopic result. It is impetrative to improve the water and nitrogen management in the desert oasis. [Copyright &y& Elsevier]
- Published
- 2008
- Full Text
- View/download PDF
25. A spatially referenced water and nitrogen management model (WNMM) for (irrigated) intensive cropping systems in the North China Plain
- Author
-
Li, Yong, White, Robert, Chen, Deli, Zhang, Jiabao, Li, Baoguo, Zhang, Yuming, Huang, Yuanfang, and Edis, Robert
- Subjects
- *
EFFECT of carbon on plants , *CARBON in soils , *NITROGEN in soils , *CROPPING systems , *WHEAT , *CORN - Abstract
Abstract: A spatially referenced biophysical model, the water and nitrogen management model (WNMM), was developed and shown to simulate dynamic soil water movement and soil–crop carbon (C) and nitrogen (N) cycling under a given agricultural management, for the purpose of identifying optimal strategies for managing water and fertiliser N under intensive cropping systems (mainly wheat–maize) in the North China Plain and other regions in the world. A uniform data structure, ARC GRID ASCII format, was used both in GIS and WNMM for achieving a close Model-GIS coupling. A significant part of WNMM adopts and modifies concepts and components from widely used models, with a focus on soil N transformations. WNMM simulates the key processes of water dynamics in the surface and subsurface of soils: including evapotranspiration, canopy interception, water movement and groundwater fluctuations; heat transfer and solute transport; crop growth; C and N cycling in the soil–crop system; and agricultural management practices (crop rotation, irrigation, fertiliser application, harvest and tillage). The model runs on a daily time step at any desired scale and is driven by lumped variables (meteorological and crop biological data) in text data format, and spatial variables (soil and agricultural management) in ARC GRID ASCII format. In particular, WNMM simulates all key N transformations in agricultural fields, including mineralisation of fresh crop residue N and soil organic N, formation of soil organic N, immobilisation in biomass, nitrification, ammonia (NH3) volatilisation, denitrification and nitrous oxide (N2O) emissions. WNMM has been successfully applied in Fengqiu County, Henan Province and Luancheng County, Hebei Province, China at site and regional scales. The key WNMM components were intensively calibrated and verified against comprehensive field measurements of soil water content, evapotranspiration, crop leaf area index and yield, NH3 volatilisation, denitrification and N2O emissions as well as nitrate (NO3 −)–N concentrations in the soil solution. A sensitivity analysis showed that WNMM was sensitive to changes in meteorological variables, soil hydraulic properties, land use and agricultural management. At the site scale, WNMM simulated well soil water content, crop growth and yield, NH3 volatilisation and soil NO3 −–N concentration. There was uncertainty in simulating soil denitrification and N2O emissions, when the predicted peaks of denitrification and N2O emissions at very wet conditions could not be confirmed because of limitations in the acetylene-inhibition method for measuring denitrification. At county scale, WNMM simulation of crop yield in Fengqiu County explained 22% of the variation in observed crop yields, and 31% of crop yield variation in Luancheng County where soil variation was less. These results are considered acceptable because factors such as soil salinity and other nutrient deficiencies, which have not been considered in this version of WNMM, may play a role. The source code for the WNMM is available on request. [Copyright &y& Elsevier]
- Published
- 2007
- Full Text
- View/download PDF
26. Identification and outcomes of clinical phenotypes in amyotrophic lateral sclerosis/motor neuron disease: Australian National Motor Neuron Disease observational cohort.
- Author
-
Talman P, Duong T, Vucic S, Mathers S, Venkatesh S, Henderson R, Rowe D, Schultz D, Edis R, Needham M, Macdonnell R, McCombe P, Birks C, and Kiernan M
- Subjects
- Amyotrophic Lateral Sclerosis classification, Australia, Female, Gastrostomy statistics & numerical data, Humans, Kaplan-Meier Estimate, Male, Middle Aged, Neuroprotective Agents therapeutic use, Noninvasive Ventilation statistics & numerical data, Phenotype, Prospective Studies, Registries, Riluzole therapeutic use, Time Factors, Amyotrophic Lateral Sclerosis mortality, Amyotrophic Lateral Sclerosis therapy, Disease Progression
- Abstract
Objective: To capture the clinical patterns, timing of key milestones and survival of patients presenting with amyotrophic lateral sclerosis/motor neuron disease (ALS/MND) within Australia., Methods: Data were prospectively collected and were timed to normal clinical assessments. An initial registration clinical report form (CRF) and subsequent ongoing assessment CRFs were submitted with a completion CRF at the time of death., Design: Prospective observational cohort study., Participants: 1834 patients with a diagnosis of ALS/MND were registered and followed in ALS/MND clinics between 2005 and 2015., Results: 5 major clinical phenotypes were determined and included ALS bulbar onset, ALS cervical onset and ALS lumbar onset, flail arm and leg and primary lateral sclerosis (PLS). Of the 1834 registered patients, 1677 (90%) could be allocated a clinical phenotype. ALS bulbar onset had a significantly lower length of survival when compared with all other clinical phenotypes (p<0.004). There were delays in the median time to diagnosis of up to 12 months for the ALS phenotypes, 18 months for the flail limb phenotypes and 19 months for PLS. Riluzole treatment was started in 78-85% of cases. The median delays in initiating riluzole therapy, from symptom onset, varied from 10 to 12 months in the ALS phenotypes and 15-18 months in the flail limb phenotypes. Percutaneous endoscopic gastrostomy was implemented in 8-36% of ALS phenotypes and 2-9% of the flail phenotypes. Non-invasive ventilation was started in 16-22% of ALS phenotypes and 21-29% of flail phenotypes., Conclusions: The establishment of a cohort registry for ALS/MND is able to determine clinical phenotypes, survival and monitor time to key milestones in disease progression. It is intended to expand the cohort to a more population-based registry using opt-out methodology and facilitate data linkage to other national registries., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.)
- Published
- 2016
- Full Text
- View/download PDF
Catalog
Discovery Service for Jio Institute Digital Library
For full access to our library's resources, please sign in.