1
40
9
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Title
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January 2023 List
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
January List 2023
URL Address
<a href="http://doi.org/10.1186/s13052-022-01374-8" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s13052-022-01374-8</a>
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Title
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New insights in pediatrics in 2021: choices in allergy and immunology, critical care, endocrinology, gastroenterology, genetics, haematology, infectious diseases, neonatology, neurology, nutrition, palliative care, respiratory tract illnesses and telemedicine
Publisher
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Italian Journal of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Communicable Diseases; Critical Care; Endocrinology; Genetics; Hematology; Immunology; Internal Medicine; Medical Allergy; Neonatology; Neurology; Nutrition; Palliative Care; Pediatrics Specialties; Respiratory Tract Diseases; Telemedicine
Creator
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Caffarelli C; Santamaria F; Piro E; Basilicata S; Delle Cave V; Cipullo M; Bernasconi S; Corsello G
Description
An account of the resource
In this review, we report the developments across pediatric subspecialties that have been published in the Italian Journal of Pediatrics in 2021. We highlight advances in allergy and immunology, critical care, endocrinology, gastroenterology, genetics, hematology, infectious diseases, neonatology, neurology, nutrition, palliative care, respiratory tract illnesses and telemedicine.
Identifier
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<a href="http://doi.org/10.1186/s13052-022-01374-8" target="_blank" rel="noreferrer noopener">10.1186/s13052-022-01374-8</a>
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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).
Critical Care
Palliative Care
2022
Basilicata S
Bernasconi S
Caffarelli C
Cipullo M
Communicable Diseases
Corsello G
Delle Cave V
Endocrinology
Genetics
Hematology
Immunology
Internal Medicine
Italian Journal of Pediatrics
January List 2023
Medical Allergy
Neonatology
Neurology
Nutrition
Pediatrics Specialties
Piro E
Respiratory Tract Diseases
Santamaria F
Telemedicine
-
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Title
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July 2021 List
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
July 2021 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2021-321667" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2021-321667</a>
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Title
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Fifteen-minute consultation: How to approach the withdrawal of neonatal intensive care
Publisher
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Archives of Disease in Childhood: Education and Practice Edition
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
palliative care; neonatology; psychology; genetics
Creator
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Premadeva I; Gardham A; Faller A; Selkirk L
Description
An account of the resource
Withdrawal of life-sustaining support on the neonatal unit presents a set of unique challenges specific in this age group of patients. This article aims to provide an overview of the key factors that should be considered during this process. It explores the practicalities of care delivery that reflects the psychological impact of undergoing end-of-life care on parents and team members. It will also highlight the role of clinical genetics that can be used to understand the underlying disease pathology and therefore can be a valuable tool in the difficult decision-making process.
Identifier
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<a href="http://doi.org/10.1136/archdischild-2021-321667" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2021-321667</a>
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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).
2021
Archives of Disease in Childhood: Education and Practice Edition
Faller A
Gardham A
Genetics
July 2021 List
Neonatology
Palliative Care
Premadeva I
Psychology
Selkirk L
-
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Title
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January 2020 List
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
January 2020 List
URL Address
<a href="http://doi.org/10.1016/j.socscimed.2019.112522" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.socscimed.2019.112522</a>
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Title
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Mortality in parents after the death of a child
Publisher
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Social Science & Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
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Attitude to Death; Bereavement; Child Mortality; Genetics; Heart Diseases -- Mortality; Human; Life Expectancy; Middle Age; Mortality -- Risk Factors; Parental Attitudes; Peer Group; Public Health; Twins; United States
Creator
An entity primarily responsible for making the resource
Song J; Mailick M R; Greenberg J S; Floyd F J
Description
An account of the resource
The death of a child is a traumatic stressor that takes a toll on the health of parents. This study examined long-term impacts of the death of a child on the risk of early mortality in bereaved parents. In a follow-up analysis, a twin subsample was analyzed to examine potential genetic confounding. We analyzed data from the Midlife in the United States (MIDUS) study. The primary sample consists of two groups of MIDUS 2 participants (2004–06); (1) parents who experienced the death of a child prior to MIDUS 2 (n = 451) and (2) comparison parents who had not experienced death of any children (n = 1804) (mean age = 63). We also analyzed 52 twin pairs in which one twin experienced the death of a child and 271 twin pairs in which both twins had all living children. Mortality status of parents was assessed in 2017. Parents who had experienced the death of a child had a 32% higher likelihood of early mortality (defined as dying earlier than life expectancy) than their peers who did not have any deceased children, and they were more likely to die of heart disease. Analyses of the twin subsample revealed significantly lower concordance for early mortality among the pairs with a bereaved twin than among control twins, consistent with non-genetic effects. The findings suggest that the death of a child has lasting impacts on the risk of early mortality in bereaved parents. This study provides the first U.S. estimate of bereavement effects on mortality extending through the parents' full life course, with significant public health implications. In addition, analysis of concordance of early death rates in the twin subsample suggests the impact on mortality of parental bereavement, net of genetic factors. • 32% higher rate of mortality in bereaved parents than non-bereaved parents. • Parental mortality effect confirmed in twin sample. • Highest death rates from heart disease in bereaved parents.
Identifier
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<a href="http://doi.org/10.1016/j.socscimed.2019.112522" target="_blank" rel="noreferrer noopener">10.1016/j.socscimed.2019.112522</a>
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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).
2019
Attitude To Death
Bereavement
Child Mortality
Floyd F J
Genetics
Greenberg J S
Heart Diseases -- Mortality
Human
January 2020 List
Life Expectancy
Mailick M R
Middle Age
Mortality -- Risk Factors
Parental Attitudes
Peer Group
Public Health
Social science & medicine
Song J
Twins
United States
-
Dublin Core
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Title
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February 2019 List
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
February 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.360" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1016/j.jpainsymman.2018.10.360</a>
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Title
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Characteristics of a Perinatal Palliative Care Program Over 10 years
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
infant; hospice; obstetrician; palliative therapy; major clinical study; retrospective study; comfort; medical record; patient referral; neonatal intensive care unit; neonatologist; conference abstract; human; child; female; male; controlled study; diagnosis; resuscitation; positive end expiratory pressure; genetics
Creator
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Doherty M; Dumond LG; Williams R; Stoppels N
Description
An account of the resource
Background: Perinatal Hospice is a relatively new component of pediatric palliative care, which supports families who are expecting the birth of a child with life-threatening or life-limiting condition. Parents in this situation have unique needs and often experience emotional isolation following their child's loss. This study explores the characteristics of babies and families referred for perinatal hospice, and provides descriptive analysis of diagnosis, interventions and outcomes.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.360" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.360</a>
2018
Child
Comfort
conference abstract
Controlled Study
Diagnosis
Doherty M
Dumond LG
February 2019 List
Female
Genetics
Hospice
Human
Infant
Journal of Pain and Symptom Management
Major Clinical Study
Male
Medical Record
Neonatal Intensive Care Unit
Neonatologist
obstetrician
Palliative Therapy
Patient Referral
positive end expiratory pressure
Resuscitation
Retrospective Study
Stoppels N
Williams R
-
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/10.1136/archdischild-2013-305246" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2013-305246</a>
<a href="http://adc.bmj.com/content/99/8/754.abstract" target="_blank" rel="noreferrer noopener">http://adc.bmj.com/content/99/8/754.abstract</a>
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Title
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Charting the territory: symptoms and functional assessment in children with progressive, non-curable conditions
Publisher
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Archives Of Disease In Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
PEDI Study; Metabolic; Neurodisability; Genetics
Creator
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Steele R; Siden H; Cadell S; Davies B; Andrews GS; Feichtinger L; Singh M
Description
An account of the resource
Background Children with progressive, non-curable genetic, metabolic, or neurological conditions require specialised care to enhance their quality of life. Prevention and relief of physical symptoms for these children needs to begin at diagnosis, yet, little is known about their patterns of symptoms and functional abilities.Aim To describe these children's symptoms, as well as how the children's condition affects them physically.Design Cross-sectional, baseline results from an observational, longitudinal study, Charting the Territory, that followed 275 children and their families.Setting/participants Seven tertiary care children's hospitals in Canada, 2 in the USA. Families were eligible based on the child's condition. A total of 275 children from 258 families participated.Results The 3 most common symptoms in these children were pain, sleep problems, and feeding difficulties; on average, they had 3.2 symptoms of concern. There was a pattern of under-reporting of children's symptoms for clinicians compared with parents. Regardless of use of associated medications, pain, feeding and constipation symptoms were often frequent and distressing. Children with a G/J tube had a higher total number of symptoms, and respiratory problems, pain, feeding difficulties and constipation were more likely to occur. They also tended to have frequent and distressing symptoms, and to need extensive mobility modifications which, in turn, were associated with higher numbers of symptoms.Conclusions These children experience multiple symptoms that have been previously documented individually, but not collectively. Effective interventions are needed to reduce their symptom burden. Future longitudinal analyses will examine which disease-modifying interventions improve, or do not improve, symptom burden.
2014-08
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2013-305246" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2013-305246</a>
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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
2014
Andrews GS
Archives of Disease in Childhood
Backlog
Cadell S
Charting the territory
Davies B
Feichtinger L
Genetics
Journal Article
Metabolic
Neurodisability
PEDI Study
Siden H
Singh M
Steele R
-
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.1399-0004.2007.00790.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1399-0004.2007.00790.x</a>
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Title
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Loss-of-function mutations in the Nav1.7 gene underlie congenital indifference to pain in multiple human populations
Publisher
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Clinical Genetics
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
Female; Humans; Male; Mutation; DNA Mutational Analysis; Pedigree; Chromosomes; Human; Genetics; Population; Chromosome Mapping; Haplotypes; Pair 2/genetics; Codon; Congenital/genetics; Founder Effect; Frameshift Mutation; Nonsense; Pain Insensitivity; Sequence Deletion; Sodium Channels/genetics
Creator
An entity primarily responsible for making the resource
Goldberg YP; MacFarlane J; MacDonald ML; Thompson J; Dube MP; Mattice M; Fraser R; Young C; Hossain S; Pape T; Payne B; Radomski C; Donaldson G; Ives E; Cox J; Younghusband HB; Green R; Duff A; Boltshauser E; Grinspan GA; Dimon JH; Sibley BG; Andria G; Toscano E; Kerdraon J; Bowsher D; Pimstone SN; Samuels ME; Sherrington R; Hayden MR
Description
An account of the resource
Congenital indifference to pain (CIP) is a rare condition in which patients have severely impaired pain perception, but are otherwise essentially normal. We identified and collected DNA from individuals from nine families of seven different nationalities in which the affected individuals meet the diagnostic criteria for CIP. Using homozygosity mapping and haplotype sharing methods, we narrowed the CIP locus to chromosome 2q24-q31, a region known to contain a cluster of voltage-gated sodium channel genes. From these prioritized candidate sodium channels, we identified 10 mutations in the SCN9A gene encoding the sodium channel protein Nav1.7. The mutations completely co-segregated with the disease phenotype, and nine of these SCN9A mutations resulted in truncation and loss-of-function of the Nav1.7 channel. These genetic data further support the evidence that Nav1.7 plays an essential role in mediating pain in humans, and that SCN9A mutations identified in multiple different populations underlie CIP.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1399-0004.2007.00790.x" target="_blank" rel="noreferrer">10.1111/j.1399-0004.2007.00790.x</a>
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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
2007
Andria G
Backlog
Boltshauser E
Bowsher D
Chromosome Mapping
Chromosomes
Clinical Genetics
Codon
Congenital/genetics
Cox J
Dimon JH
DNA Mutational Analysis
Donaldson G
Dube MP
Duff A
Female
Founder Effect
Frameshift Mutation
Fraser R
Genetics
Goldberg YP
Green R
Grinspan GA
Haplotypes
Hayden MR
Hossain S
Human
Humans
Ives E
Journal Article
Kerdraon J
MacDonald ML
MacFarlane J
Male
Mattice M
Mutation
Nonsense
Pain Insensitivity
Pair 2/genetics
Pape T
Payne B
Pedigree
Pimstone SN
Population
Radomski C
Samuels ME
Sequence Deletion
Sherrington R
Sibley BG
Sodium Channels/genetics
Thompson J
Toscano E
Young C
Younghusband HB
-
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/10.1016/s0022-3476(65)80303-1" target="_blank" rel="noreferrer">http://doi.org/10.1016/s0022-3476(65)80303-1</a>
Dublin Core
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Title
A name given to the resource
Observations on Huntington's Chorea in Childhood
Publisher
An entity responsible for making the resource available
The Journal Of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
1965
Subject
The topic of the resource
Child; Prognosis; Mental Disorders; Movement Disorders; Medical; Q3 Literature Search; Diagnosis; Radiography; Pathology; CHOREA; CHOREA; Genetics; Genetics; HEREDITARY; Human; VENTRICULOGRAPHY
Creator
An entity primarily responsible for making the resource
MARKHAM CH; JWKNOX
Identifier
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<a href="http://doi.org/10.1016/s0022-3476(65)80303-1" target="_blank" rel="noreferrer">10.1016/s0022-3476(65)80303-1</a>
Rights
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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
1965
1965
Backlog
Child
CHOREA
Diagnosis
Genetics
HEREDITARY
Human
Journal Article
JWKNOX
MARKHAM CH
Medical
Mental Disorders
Movement Disorders
Pathology
Prognosis
Q3 Scoping Review Results
Radiography
The Journal Of Pediatrics
VENTRICULOGRAPHY
-
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
November 2017 List
Notes
<p>1524-4571<br />Lee, Teresa M<br />Hsu, Daphne T<br />Kantor, Paul<br />Towbin, Jeffrey A<br />Ware, Stephanie M<br />Colan, Steven D<br />Chung, Wendy K<br />Jefferies, John L<br />Rossano, Joseph W<br />Castleberry, Chesney D<br />Addonizio, Linda J<br />Lal, Ashwin K<br />Lamour, Jacqueline M<br />Miller, Erin M<br />Thrush, Philip T<br />Czachor, Jason D<br />Razoky, Hiedy<br />Hill, Ashley<br />Lipshultz, Steven E<br />Journal Article<br />Review<br />United States<br />Circ Res. 2017 Sep 15;121(7):855-873. doi: 10.1161/CIRCRESAHA.116.309386.</p>
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Title
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Pediatric Cardiomyopathies
Publisher
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Circulation Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Epidemiology; Genetics; Pediatrics
Creator
An entity primarily responsible for making the resource
Lee TM; Hsu DT; Kantor P; Towbin JA; Ware SM; Colan SD; Chung WK; Jefferies JL; Rossano JW; Castleberry CD; Addonizio LJ; Lal AK; Lamour JM; Miller EM; Thrush PT; Czachor JD; Razoky H; Hill A; Lipshultz SE
Description
An account of the resource
Pediatric cardiomyopathies are rare diseases with an annual incidence of 1.1 to 1.5 per 100 000. Dilated and hypertrophic cardiomyopathies are the most common; restrictive, noncompaction, and mixed cardiomyopathies occur infrequently; and arrhythmogenic right ventricular cardiomyopathy is rare. Pediatric cardiomyopathies can result from coronary artery abnormalities, tachyarrhythmias, exposure to infection or toxins, or secondary to other underlying disorders. Increasingly, the importance of genetic mutations in the pathogenesis of isolated or syndromic pediatric cardiomyopathies is becoming apparent. Pediatric cardiomyopathies often occur in the absence of comorbidities, such as atherosclerosis, hypertension, renal dysfunction, and diabetes mellitus; as a result, they offer insights into the primary pathogenesis of myocardial dysfunction. Large international registries have characterized the epidemiology, cause, and outcomes of pediatric cardiomyopathies. Although adult and pediatric cardiomyopathies have similar morphological and clinical manifestations, their outcomes differ significantly. Within 2 years of presentation, normalization of function occurs in 20% of children with dilated cardiomyopathy, and 40% die or undergo transplantation. Infants with hypertrophic cardiomyopathy have a 2-year mortality of 30%, whereas death is rare in older children. Sudden death is rare. Molecular evidence indicates that gene expression differs between adult and pediatric cardiomyopathies, suggesting that treatment response may differ as well. Clinical trials to support evidence-based treatments and the development of disease-specific therapies for pediatric cardiomyopathies are in their infancy. This compendium summarizes current knowledge of the genetic and molecular origins, clinical course, and outcomes of the most common phenotypic presentations of pediatric cardiomyopathies and highlights key areas where additional research is required. CLINICAL TRIAL REGISTRATION: URL: http://www.clinicaltrials.gov. Unique identifiers: NCT02549664 and NCT01912534.
Identifier
An unambiguous reference to the resource within a given context
10.1161/circresaha.116.309386
Rights
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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).
2017
Addonizio LJ
Castleberry CD
Chung WK
Circulation Research
Colan SD
Czachor JD
Epidemiology
Genetics
Hill A
Hsu DT
Jefferies JL
Kantor P
Lal AK
Lamour JM
Lee TM
Lipshultz SE
Miller EM
November 2017 List
Pediatrics
Razoky H
Rossano JW
Thrush PT
Towbin JA
Ware SM
-
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
July 2017 List
URL Address
<a href="https://onlinelibrary.wiley.com/doi/10.1111/jpc.12993">https://onlinelibrary.wiley.com/doi/10.1111/jpc.12993</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
'A Short Time but a Lovely Little Short Time': Bereaved Parents' Experiences of Having a Child with Spinal Muscular Atrophy Type 1
Publisher
An entity responsible for making the resource available
Journal Of Paediatrics And Child Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Bereavement; Genetics; Neuromuscular Disease; Qualitative Research; Spinal Muscular Atrophy
Creator
An entity primarily responsible for making the resource
Higgs EJ; McClaren BJ; Sahhar MAR; Ryan MM; Forbes R
Description
An account of the resource
AIM: Spinal muscular atrophy (SMA) type 1 is a relatively common, untreatable and invariably fatal neuromuscular disorder of early childhood. Psychosocial care is vital in management of families affected by this disease. There are few studies examining the impact of having a family member with a neuromuscular disorder, and none describing parents' experiences of having a child with SMA type 1. This study explored parents' perspectives of having a child with SMA type 1, from diagnosis to bereavement, in order to inform clinical practice by identifying aspects most meaningful to parents and to aid development of support strategies. METHODS: This qualitative study undertook thematic analysis of 11 in-depth interviews with 13 bereaved parents of children with SMA type 1. RESULTS: While individuals' experiences were unique, common themes emerging from the data include: experiencing shock and anticipatory grief, processing feelings of responsibility and helplessness, experiencing multiple losses including the loss of future reproductive freedom, feeling supported, regaining a sense of control by making decisions about the child's life and death, and finding peace in the dying process. CONCLUSION: These findings highlight the importance of a multidisciplinary approach to the care of such families, including psychosocial support beginning from the time of diagnosis and continuing to bereavement. We suggest areas for further exploration, with a goal to develop family-centred and evidence-based psychosocial care guidelines to complement the current Standards of Care for Spinal Muscular Atrophy.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://onlinelibrary.wiley.com/doi/10.1111/jpc.12993">10.1111/jpc.12993</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).
2016
Bereavement
Forbes R
Genetics
Higgs EJ
Journal of Paediatrics and Child Health
July 2017 List
McClaren BJ
Neuromuscular Disease
Qualitative Research
Ryan MM
Sahhar MAR
Spinal Muscular Atrophy