1
40
3
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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/s10545-011-9388-3" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s10545-011-9388-3</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
A name given to the resource
The quick motor function test: a new tool to rate clinical severity and motor function in Pompe patients
Publisher
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Journal of Inherited Metabolic Disease
Date
A point or period of time associated with an event in the lifecycle of the resource
2012
Subject
The topic of the resource
children; responsiveness; Medicine; Endocrinology & Metabolism; Genetics & Heredity; Research & Experimental; disease; scale; acid maltase deficiency; genotype-phenotype correlation; muscle function; muscular-dystrophy; natural course; validation; tone and motor problems; glycogen storage disease type II; tool development; scale development; motor function
Creator
An entity primarily responsible for making the resource
van Capelle C I; van der Beek N A M E; de Vries J M; van Doorn P A; Duivenvoorden H J; Leshner R T; Hagemans M L C; van der Ploeg A T
Description
An account of the resource
Pompe disease is a lysosomal storage disorder characterized by progressive muscle weakness. With the emergence of new treatment options, psychometrically robust outcome measures are needed to monitor patients' clinical status. We constructed a motor function test that is easy and quick to use. The Quick Motor Function Test (QMFT) was constructed on the basis of the clinical expertise of several physicians involved in the care of Pompe patients; the Gross Motor Function Measure and the IPA/Erasmus MC Pompe survey. The test comprises 16 items. Validity and test reliability were determined in a cohort of 91 Pompe patients (5 to 76 years of age). In addition, responsiveness of the scale to changes in clinical condition over time was examined in a subgroup of 18 patients receiving treatment and 23 untreated patients. Interrater and intrarater reliabilities were good (intraclass correlation coefficients: 0.78 to 0.98 and 0.76 to 0.98). The test correlated strongly with proximal muscle strength assessed by hand held dynamometry and manual muscle testing (rs= 0.81, rs=0.89), and showed significant differences between patient groups with different disease severities. A clinical-empirical exploration to assess responsiveness showed promising results, albeit it should be repeated in a larger group of patients. In conclusion, the Quick Motor Function Test can reliably rate clinical severity and motor function in children and adults with Pompe disease.
Identifier
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<a href="http://doi.org/10.1007/s10545-011-9388-3" target="_blank" rel="noreferrer noopener">10.1007/s10545-011-9388-3</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).
2012
acid maltase deficiency
Children
de Vries J M
Disease
Duivenvoorden H J
Endocrinology & Metabolism
Genetics & Heredity
genotype-phenotype correlation
glycogen storage disease type II
Hagemans M L C
Journal Of Inherited Metabolic Disease
Leshner R T
Medicine
motor function
muscle function
muscular-dystrophy
natural course
Research & Experimental
responsiveness
Scale
scale development
tone and motor problems
tool development
VALIDATION
van Capelle C I
van der Beek N A M E
van der Ploeg A T
van Doorn P 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
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/10.1016/j.nmd.2014.01.003" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.nmd.2014.01.003</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
Hammersmith Functional Motor Scale and Motor Function Measure-20 in non ambulant SMA patients
Publisher
An entity responsible for making the resource available
Neuromuscular Disorders
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
responsiveness; Neurosciences & Neurology; Spinal muscular atrophy; trial; spinal muscular-atrophy; validation; neuromuscular diseases; Outcome measures; walk test; tone and motor problems; SMA1; tool development; scale development; HMFS; MFM
Creator
An entity primarily responsible for making the resource
Mazzone E; De Sanctis R; Fanelli L; Bianco F; Main M; van den Hauwe M; Ash M; de Vries R; Mata J F; Schaefer K; D'Amico A; Colia G; Palermo C; Scoto M; Mayhew A; Eagle M; Servais L; Vigo M; Febrer A; Korinthenberg R; Jeukens M; de Viesser M; Totoescu A; Voit T; Bushby K; Muntoni F; Goemans N; Bertini E; Pane M; Mercuri E
Description
An account of the resource
The aim of this prospective longitudinal multi centric study was to evaluate the correlation between the Hammersmith Functional Motor Scale and the 20 item version of the Motor Function Measure in non ambulant SMA children and adults at baseline and over a 12 month period. Seventy-four non-ambulant patients performed both measures at baseline and 49 also had an assessment 12 month later. At baseline the scores ranged between 0 and 40 on the Hammersmith Motor function Scale and between 3 and 45 on the Motor Function Measure 20. The correlation between the two scales was 0.733. The 12 month changes ranged between 11 and 4 for the Hammersmith and between 11 and 7 for the Motor Function Measure 20. The correlation between changes was 0.48. Our results suggest that both scales provide useful information although they appeared to work differently at the two extremes of the spectrum of abilities. The Hammersmith Motor Function Scale appeared to be more suitable in strong non ambulant patients, while the Motor Function Measures appeared to be more sensitive to capture activities and possible changes in the very weak patients, including more items capturing axial and upper limb activities. The choice of these measures in clinical trials should therefore depend on inclusion criteria and magnitude of expected changes. (C) 2014 Published by Elsevier B.V.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.nmd.2014.01.003" target="_blank" rel="noreferrer noopener">10.1016/j.nmd.2014.01.003</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).
2014
Ash M
Bertini E
Bianco F
Bushby K
Colia G
D'Amico A
De Sanctis R
de Viesser M
de Vries R
Eagle M
Fanelli L
Febrer A
Goemans N
HMFS
Jeukens M
Korinthenberg R
Main M
Mata J F
Mayhew A
Mazzone E
Mercuri E
MFM
Muntoni F
Neuromuscular Diseases
Neuromuscular Disorders
Neurosciences & Neurology
Outcome measures
Palermo C
Pane M
responsiveness
scale development
Schaefer K
Scoto M
Servais L
SMA1
Spinal Muscular Atrophy
spinal muscular-atrophy
tone and motor problems
tool development
Totoescu A
trial
VALIDATION
van den Hauwe M
Vigo M
Voit T
walk test
-
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/10.1111/j.1365-2214.2005.00519.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1365-2214.2005.00519.x</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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Child or family assessed measures of activity performance and participation for children with cerebral palsy: a structured review
Publisher
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Child: Care, Health And Development
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
PedPal Lit; Validity; Activities of Daily Living Attitude to Health Cerebral Palsy/; interpretability; precision; psychology Child Disability Evaluation Humans Life Style Parents Patient Satisfaction; Psychomotor Performance Quality of Life Questionnaires Reproducibility of Results; reliability; responsiveness; Self Assessment (Psychology)%X BACKGROUND: There is a need to measure children's 'activity performance and participation' as defined in the World Health Organization's International Classification of Functioning
Creator
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Morris C; Kurinczuk JJ; Fitzpatrick R
Identifier
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<a href="http://doi.org/10.1111/j.1365-2214.2005.00519.x" target="_blank" rel="noreferrer">10.1111/j.1365-2214.2005.00519.x</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
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Journal Article
Description
An account of the resource
2005
2005
Activities of Daily Living Attitude to Health Cerebral Palsy/
Backlog
Child: Care, Health and Development
Fitzpatrick R
interpretability
Journal Article
Kurinczuk JJ
Morris C
PedPal Lit
precision
psychology Child Disability Evaluation Humans Life Style Parents Patient Satisfaction
Psychomotor Performance Quality of Life Questionnaires Reproducibility of Results
Reliability
responsiveness
Self Assessment (Psychology)%X BACKGROUND: There is a need to measure children's 'activity performance and participation' as defined in the World Health Organization's International Classification of Functioning
Validity