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40
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1007/s00415-009-5261-9" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s00415-009-5261-9</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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An evaluation of rating scales utilized for deep brain stimulation for dystonia
Publisher
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Journal of Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
Dystonia; Neurosciences & Neurology; Deep brain stimulation; cervical dystonia; globus-pallidus internus; primary generalized dystonia; electrical-stimulation; Globus pallidus internus; movement-disorders; Outcome; pallidotomy; Rating; scales; secondary dystonia; segmental dystonia; term-follow-up; torsion dystonia; tone and motor problems; unspecified Q3 conditions; Q3 conditions; tool development; scale development; surgical intervention; deep brain stimulation
Creator
An entity primarily responsible for making the resource
Susatia F; Malaty I A; Foote K D; Wu S S; Zeilman P R; Mishra M; Rodriguez R L; ul Haq I; Jacobson C E; Sun A Q; Okun M S
Description
An account of the resource
The objective of this study was to examine globus pallidus internus deep brain stimulation (GPi-DBS) outcomes in primary and secondary dystonia, derived from blinded ratings using two scales and two raters. Twenty-five patients with variable presentations of dystonia were evaluated with videotaped standardized dystonia rating scales at preoperative baseline and at 6 and 12 months following GPi-DBS implantation. These 75 examination videos were retrospectively evaluated, independently and in random order, by two movement disorder neurologists who were blinded to the treatment status. Both neurologists scored each videotaped evaluation using the Burke-Fahn-Marsden Dystonia Rating Scale-motor part (BFMDRS-M) and the Unified Dystonia Rating Scale (UDRS). A final score for each video was assigned by averaging the raters' scores. An intra-class correlation coefficient was used to calculate inter-rater reliability. A linear mixed model was fitted to investigate the time effect and its interaction with type of dystonia (primary versus secondary) for each rating scale. Inter-rater reliability was excellent. Intraclass correlation coefficients ranged from 0.994 to 0.997 for both scales at baseline, 6 and 12 months. The average motor improvement scores after GPi DBS for the entire heterogeneous group of dystonia patients after 6 and 12 months of stimulation was 21.32% (p = 0.0010) and 28.95% (p = 0.0017), respectively, when the UDRS score was used. Similar levels of improvement 20.46% (p = 0.0055) at 6 months and 27.39% (p = 0.00197) at 12 months were found using the BFMDRS-M score. Analysis using unblinded scores from our database revealed a 32.99 and 37.27% UDRS improvement at 6 and 12 months, and an improvement in UDRS score of 38.5 and 43.7% when the analysis was limited to only primary dystonia. If the data were further segregated to include only cases of DYT-1 primary generalized dystonia, the UDRS benefit increased to 48.24%. Our primary dystonia group was diluted by the presence of both old- and young-onset patients, as well as focal, segmental and generalized dystonia. In conclusion, (1) evaluating motor outcomes of DBS therapy for dystonia using independent, randomized retrospective rating by blinded raters' results in lower improvement scores than when outcomes are rated by unblinded treating neurologists. Blinded methodology may be superior and might produce a more realistic assessment of motor outcomes after DBS in patients with dystonia; (2) outcomes were similar whether the BFMDRS-M or UDRS was utilized; (3) GPi-DBS was effective in treating sustained involuntary motor co-contractions in medication refractory dystonia patients, more so in primary dystonia.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s00415-009-5261-9" target="_blank" rel="noreferrer noopener">10.1007/s00415-009-5261-9</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2010
cervical dystonia
deep brain stimulation
Dystonia
electrical-stimulation
Foote K D
globus pallidus internus
globus-pallidus internus
Jacobson C E
Journal Of Neurology
Malaty I A
Mishra M
movement-disorders
Neurosciences & Neurology
Okun M S
Outcome
pallidotomy
primary generalized dystonia
Q3 conditions
Rating
Rodriguez R L
scale development
scales
secondary dystonia
segmental dystonia
Sun A Q
surgical intervention
Susatia F
term-follow-up
tone and motor problems
tool development
torsion dystonia
ul Haq I
unspecified Q3 conditions
Wu S S
Zeilman P R
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1007/bf00867353" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/bf00867353</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Melatonin, cortisol and body temperature rhythms in Lennox-Gastaut patients with or without circadian rhythm sleep disorders
Publisher
An entity responsible for making the resource available
Journal of Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
1993
Subject
The topic of the resource
sleep disturbance/disorders; congenital hydrocephalus; Lennox-Gastaut syndrome; West syndrome; trajectory; characteristics; LGS
Creator
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Laakso M L; Leinonen L; Hätönen T; Alila A; Heiskala H
Description
An account of the resource
The daily rhythms of melatonin, cortisol and body temperature were studied in 16 institutionalized subjects with the Lennox-Gastaut syndrome. The results of 9 subjects with normal daily rhythms of sleep and wakefulness (group 1) were compared with those of 7 subjects with disordered sleep (group 2). Salivary samples were collected and axillary temperature was measured every 2 h during two or three separate 26-h periods. The hormones were measured by radioimmunoassays. The rhythms were characterized with single cosinor analysis. Two subjects in group 1 and six subjects in group 2 had abnormalities in their rhythms of temperature, cortisol or melatonin. All three rhythms were disrupted in two subjects of group 2. These two subjects were the only ones with disrupted cortisol rhythm. The diversity of rhythm pathologies suggested partly separate regulatory mechanisms for each rhythm. The co-occurrence of circadian rhythm sleep disorders with the deteriorated melatonin rhythm raised the question as to whether the sleep disorders of these subjects, like those of subjects with healthy brains, could be relieved by the induction of normal melatonin rhythm.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/bf00867353" target="_blank" rel="noreferrer noopener">10.1007/bf00867353</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
1993
Alila A
characteristics
congenital hydrocephalus
Hätönen T
Heiskala H
Journal Of Neurology
Laakso M L
Leinonen L
Lennox-Gastaut syndrome
LGS
sleep disturbance/disorders
Trajectory
West syndrome
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1007/s00415-009-5352-7" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s00415-009-5352-7</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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A comparison of three measures of upper limb function in Friedreich ataxia
Publisher
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Journal of Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
tone and motor problems; Friedreich's ataxia; trajectory; characteristics
Creator
An entity primarily responsible for making the resource
Corben L A; Tai G; Wilson C; Collins V; Churchyard A J; Delatycki M B
Description
An account of the resource
Friedreich Ataxia (FRDA) is the commonest inherited ataxia. Clinical trials of pharmaceuticals are increasingly being conducted in this condition. This requires the most accurate outcome measures to enable trials to be conducted with a minimum number of subjects in the shortest time frame and to minimize the risk of false negative results. Upper limb function is a major area of morbidity in FRDA. We therefore have compared the performance of three tests of upper limb function in FRDA: the Nine Hole Peg Test (9HPT), Box and Blocks Test (BBT) and Jebsen Taylor Hand Function Test (JTHFT). This study was undertaken to ascertain the best test for inclusion in a Friedreich Ataxia Functional Composite (FAFC) test for use in clinical studies and therapeutic trials. The three tests were administered to the dominant and non-dominant upper limbs of 38 individuals with genetically proven FRDA on two occasions, 12 months apart. The results of testing were correlated with the following disease parameters; age at disease onset, disease duration and score for the Friedreich Ataxia Rating Scale (FARS). The responsiveness to change of each test was assessed by measuring the effect size and calculations of the number of subjects required for similarly powered therapeutic trials. Results for all tests correlated significantly with disease duration and FARS score. The only test scores that changed significantly over 12 months were those for the non-dominant 9HPT and BBT. Scores for these two tests also had the largest effect sizes and required the fewest subjects for similarly powered therapeutic trials. We conclude, therefore, that the non-dominant 9HPT and BBT are the best tests for inclusion in a FAFC. Since the 9HPT has already been suggested for inclusion in a FAFC, we recommend that this test is used but that it is the non-dominant limb that is tested.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s00415-009-5352-7" target="_blank" rel="noreferrer noopener">10.1007/s00415-009-5352-7</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2010
characteristics
Churchyard A J
Collins V
Corben L A
Delatycki M B
Friedreich's ataxia
Journal Of Neurology
Tai G
tone and motor problems
Trajectory
Wilson C
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1007/s00415-003-0281-3" target="_blank" rel="noreferrer">http://doi.org/10.1007/s00415-003-0281-3</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Current classification of mitochondrial disorders
Publisher
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Journal Of Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2003
Subject
The topic of the resource
Child; Humans; Adult; Mutation; Animals; adolescent; DNA; Mitochondrial/genetics; Mitochondrial Diseases/classification/genetics
Creator
An entity primarily responsible for making the resource
Andreu AL; DiMauro S
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s00415-003-0281-3" target="_blank" rel="noreferrer">10.1007/s00415-003-0281-3</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
2003
2003
Adolescent
Adult
Andreu AL
Animals
Backlog
Child
DiMauro S
DNA
Humans
Journal Article
Journal Of Neurology
Mitochondrial Diseases/classification/genetics
Mitochondrial/genetics
Mutation
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1007/s004150170140" target="_blank" rel="noreferrer">http://doi.org/10.1007/s004150170140</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
The course of the terminal phase in patients with amyotrophic lateral sclerosis
Publisher
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Journal Of Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2001
Subject
The topic of the resource
Female; Humans; Male; Palliative Care; Terminal Care; Adult; Aged; Middle Aged; Death; Disease Progression; Fear; Anxiety; quality of life; 80 and over; retrospective studies; Health Surveys; caregivers; Airway Obstruction/etiology/pathology/psychology; Amyotrophic Lateral Sclerosis/complications/pathology/psychology; Cough/etiology; Dyspnea/etiology
Creator
An entity primarily responsible for making the resource
Neudert C; Oliver D; Wasner M; Borasio GD
Description
An account of the resource
The fear of "choking to death" is on the mind of most patients suffering from amyotrophic lateral sclerosis (ALS). So far, however, there have been no systematic surveys concerning the dying phase in a general ALS population. We therefore performed a structured telephone interview with the relatives of 121 patients who died from ALS and were followed by the Motor Neuron Outpatient Clinic of the Department of Neurology, University of Munich, Germany. These data are compared with those obtained by a retrospective analysis of medical records of 50 ALS patients who were followed by the Wisdom Hospice, Rochester, UK. The data show that most ALS patients (Germany 88%, UK 98%) died peacefully, and no patient "choked to death". The symptoms most frequently reported for the last 24 hours were dyspnoea, coughing, anxiety and restlessness. Around half (G 55%, UK 52%) of the patients died at home. The main palliative measures in place during the terminal phase were: home mechanical ventilation (G 21%, UK 0%), percutaneous endoscopic gastrostomy (G 27%, UK 14%), morphine (G 27%, UK 82%) and benzodiazepines (G 32%, UK 64%). The use of these palliative measures was judged to be beneficial by almost all relatives. These data support the hypothesis of a peaceful death process in ALS and should be communicated to patients and their relatives, at the latest after the onset of dyspnoea, to relieve unwarranted fears.
2001
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s004150170140" target="_blank" rel="noreferrer">10.1007/s004150170140</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2001
80 And Over
Adult
Aged
Airway Obstruction/etiology/pathology/psychology
Amyotrophic Lateral Sclerosis/complications/pathology/psychology
anxiety
Backlog
Borasio GD
Caregivers
Cough/etiology
Death
Disease Progression
Dyspnea/etiology
Fear
Female
Health Surveys
Humans
Journal Article
Journal Of Neurology
Male
Middle Aged
Neudert C
Oliver D
Palliative Care
Quality Of Life
Retrospective Studies
Terminal Care
Wasner M