Ontology type: schema:ScholarlyArticle Open Access: True
2016-12
AUTHORSK. Casamento, A. Laverty, M. Wilsher, J. Twiss, E. Gabbay, I. Glaspole, A. Jaffe, On behalf the Pulmonary Interstitial Vascular Organisational Taskforce (PIVOT) of the Lung Foundation Australia
ABSTRACTBACKGROUND: We investigated the feasibility of using an online registry to provide prevalence data for multiple orphan lung diseases in Australia and New Zealand. METHODS: A web-based registry, The Australasian Registry Network of Orphan Lung Diseases (ARNOLD) was developed based on the existing British Paediatric Orphan Lung Disease Registry. All adult and paediatric respiratory physicians who were members of the Thoracic Society of Australia and New Zealand in Australia and New Zealand were sent regular emails between July 2009 and June 2014 requesting information on patients they had seen with any of 30 rare lung diseases. Prevalence rates were calculated using population statistics. RESULTS: Emails were sent to 649 Australian respiratory physicians and 65 in New Zealand. 231 (32.4%) physicians responded to emails a total of 1554 times (average 7.6 responses per physician). Prevalence rates of 30 rare lung diseases are reported. CONCLUSIONS: A multi-disease rare lung disease registry was implemented in the Australian and New Zealand health care settings that provided prevalence data on orphan lung diseases in this region but was limited by under reporting. More... »
PAGES42
http://scigraph.springernature.com/pub.10.1186/s13023-016-0389-z
DOIhttp://dx.doi.org/10.1186/s13023-016-0389-z
DIMENSIONShttps://app.dimensions.ai/details/publication/pub.1020544870
PUBMEDhttps://www.ncbi.nlm.nih.gov/pubmed/27090393
JSON-LD is the canonical representation for SciGraph data.
TIP: You can open this SciGraph record using an external JSON-LD service: JSON-LD Playground Google SDTT
[
{
"@context": "https://springernature.github.io/scigraph/jsonld/sgcontext.json",
"about": [
{
"id": "http://purl.org/au-research/vocabulary/anzsrc-for/2008/1117",
"inDefinedTermSet": "http://purl.org/au-research/vocabulary/anzsrc-for/2008/",
"name": "Public Health and Health Services",
"type": "DefinedTerm"
},
{
"id": "http://purl.org/au-research/vocabulary/anzsrc-for/2008/11",
"inDefinedTermSet": "http://purl.org/au-research/vocabulary/anzsrc-for/2008/",
"name": "Medical and Health Sciences",
"type": "DefinedTerm"
},
{
"inDefinedTermSet": "https://www.nlm.nih.gov/mesh/",
"name": "Australia",
"type": "DefinedTerm"
},
{
"inDefinedTermSet": "https://www.nlm.nih.gov/mesh/",
"name": "Humans",
"type": "DefinedTerm"
},
{
"inDefinedTermSet": "https://www.nlm.nih.gov/mesh/",
"name": "Lung Diseases",
"type": "DefinedTerm"
},
{
"inDefinedTermSet": "https://www.nlm.nih.gov/mesh/",
"name": "New Zealand",
"type": "DefinedTerm"
},
{
"inDefinedTermSet": "https://www.nlm.nih.gov/mesh/",
"name": "Prevalence",
"type": "DefinedTerm"
},
{
"inDefinedTermSet": "https://www.nlm.nih.gov/mesh/",
"name": "Rare Diseases",
"type": "DefinedTerm"
},
{
"inDefinedTermSet": "https://www.nlm.nih.gov/mesh/",
"name": "Registries",
"type": "DefinedTerm"
}
],
"author": [
{
"affiliation": {
"alternateName": "Sydney Children\u2019s Hospitals Network",
"id": "https://www.grid.ac/institutes/grid.430417.5",
"name": [
"Sydney Children\u2019s Hospitals Network, Sydney, Australia"
],
"type": "Organization"
},
"familyName": "Casamento",
"givenName": "K.",
"type": "Person"
},
{
"affiliation": {
"alternateName": "Great Ormond Street Hospital for Children NHS Foundation Trust",
"id": "https://www.grid.ac/institutes/grid.424537.3",
"name": [
"Great Ormond Street Hospital for Children NHS Foundation Trust, London, England"
],
"type": "Organization"
},
"familyName": "Laverty",
"givenName": "A.",
"id": "sg:person.0761436232.87",
"sameAs": [
"https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.0761436232.87"
],
"type": "Person"
},
{
"affiliation": {
"alternateName": "Auckland District Health Board",
"id": "https://www.grid.ac/institutes/grid.414057.3",
"name": [
"Auckland District Health Board, Auckland, New Zealand"
],
"type": "Organization"
},
"familyName": "Wilsher",
"givenName": "M.",
"id": "sg:person.01160717025.37",
"sameAs": [
"https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.01160717025.37"
],
"type": "Person"
},
{
"affiliation": {
"alternateName": "Starship Children's Health",
"id": "https://www.grid.ac/institutes/grid.414054.0",
"name": [
"Starship Children\u2019s Health, Grafton, Auckland, New Zealand"
],
"type": "Organization"
},
"familyName": "Twiss",
"givenName": "J.",
"id": "sg:person.01302066111.34",
"sameAs": [
"https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.01302066111.34"
],
"type": "Person"
},
{
"affiliation": {
"alternateName": "University of Notre Dame Australia",
"id": "https://www.grid.ac/institutes/grid.266886.4",
"name": [
"Institute for Health Research, University of Notre Dame, Fremantle, WA, Australia"
],
"type": "Organization"
},
"familyName": "Gabbay",
"givenName": "E.",
"id": "sg:person.0617767634.42",
"sameAs": [
"https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.0617767634.42"
],
"type": "Person"
},
{
"affiliation": {
"alternateName": "Monash University",
"id": "https://www.grid.ac/institutes/grid.1002.3",
"name": [
"Alfred Hospital, Melbourne, Australia",
"Monash University, Melbourne, Australia"
],
"type": "Organization"
},
"familyName": "Glaspole",
"givenName": "I.",
"id": "sg:person.0601144746.84",
"sameAs": [
"https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.0601144746.84"
],
"type": "Person"
},
{
"affiliation": {
"alternateName": "UNSW Australia",
"id": "https://www.grid.ac/institutes/grid.1005.4",
"name": [
"School of Women\u2019s and Children\u2019s Health, UNSW Medicine, University of New South Wales, Sydney, NSW, Australia",
"Department of Respiratory Medicine, Sydney Children\u2019s Hospital Randwick, Sydney, NSW, Australia"
],
"type": "Organization"
},
"familyName": "Jaffe",
"givenName": "A.",
"id": "sg:person.01275706001.46",
"sameAs": [
"https://app.dimensions.ai/discover/publication?and_facet_researcher=ur.01275706001.46"
],
"type": "Person"
},
{
"familyName": "On behalf the Pulmonary Interstitial Vascular Organisational Taskforce (PIVOT) of the Lung Foundation Australia",
"type": "Person"
}
],
"citation": [
{
"id": "https://doi.org/10.1136/adc.2007.134940",
"sameAs": [
"https://app.dimensions.ai/details/publication/pub.1005325164"
],
"type": "CreativeWork"
},
{
"id": "https://doi.org/10.1002/ppul.20783",
"sameAs": [
"https://app.dimensions.ai/details/publication/pub.1006058711"
],
"type": "CreativeWork"
},
{
"id": "https://doi.org/10.1542/peds.2011-0567",
"sameAs": [
"https://app.dimensions.ai/details/publication/pub.1018933599"
],
"type": "CreativeWork"
},
{
"id": "https://doi.org/10.1164/rccm.201305-0923st",
"sameAs": [
"https://app.dimensions.ai/details/publication/pub.1024479309"
],
"type": "CreativeWork"
},
{
"id": "sg:pub.10.1186/1750-1172-5-s1-o21",
"sameAs": [
"https://app.dimensions.ai/details/publication/pub.1025866155",
"https://doi.org/10.1186/1750-1172-5-s1-o21"
],
"type": "CreativeWork"
},
{
"id": "https://doi.org/10.1016/s0140-6736(10)60680-0",
"sameAs": [
"https://app.dimensions.ai/details/publication/pub.1026380850"
],
"type": "CreativeWork"
},
{
"id": "https://doi.org/10.1183/09031936.00053606",
"sameAs": [
"https://app.dimensions.ai/details/publication/pub.1026969321"
],
"type": "CreativeWork"
},
{
"id": "https://doi.org/10.1016/j.cct.2010.06.007",
"sameAs": [
"https://app.dimensions.ai/details/publication/pub.1027132827"
],
"type": "CreativeWork"
},
{
"id": "https://doi.org/10.1164/rccm.2208002",
"sameAs": [
"https://app.dimensions.ai/details/publication/pub.1027922151"
],
"type": "CreativeWork"
},
{
"id": "https://doi.org/10.1164/rccm.2208006",
"sameAs": [
"https://app.dimensions.ai/details/publication/pub.1038995539"
],
"type": "CreativeWork"
},
{
"id": "https://doi.org/10.1111/j.1440-1754.2009.01608.x",
"sameAs": [
"https://app.dimensions.ai/details/publication/pub.1039250614"
],
"type": "CreativeWork"
},
{
"id": "https://doi.org/10.1111/j.1440-1754.2009.01608.x",
"sameAs": [
"https://app.dimensions.ai/details/publication/pub.1039250614"
],
"type": "CreativeWork"
},
{
"id": "sg:pub.10.1186/1750-1172-6-57",
"sameAs": [
"https://app.dimensions.ai/details/publication/pub.1040933794",
"https://doi.org/10.1186/1750-1172-6-57"
],
"type": "CreativeWork"
},
{
"id": "sg:pub.10.1186/1750-1172-6-49",
"sameAs": [
"https://app.dimensions.ai/details/publication/pub.1041119215",
"https://doi.org/10.1186/1750-1172-6-49"
],
"type": "CreativeWork"
},
{
"id": "https://doi.org/10.1136/thoraxjnl-2012-203201",
"sameAs": [
"https://app.dimensions.ai/details/publication/pub.1047260873"
],
"type": "CreativeWork"
},
{
"id": "https://doi.org/10.1136/thoraxjnl-2012-203201",
"sameAs": [
"https://app.dimensions.ai/details/publication/pub.1047260873"
],
"type": "CreativeWork"
},
{
"id": "https://doi.org/10.1093/qjmed/hci128",
"sameAs": [
"https://app.dimensions.ai/details/publication/pub.1050927083"
],
"type": "CreativeWork"
},
{
"id": "sg:pub.10.1186/1750-1172-9-81",
"sameAs": [
"https://app.dimensions.ai/details/publication/pub.1052314243",
"https://doi.org/10.1186/1750-1172-9-81"
],
"type": "CreativeWork"
},
{
"id": "https://doi.org/10.1093/pubmed/fdv099",
"sameAs": [
"https://app.dimensions.ai/details/publication/pub.1059982313"
],
"type": "CreativeWork"
}
],
"datePublished": "2016-12",
"datePublishedReg": "2016-12-01",
"description": "BACKGROUND: We investigated the feasibility of using an online registry to provide prevalence data for multiple orphan lung diseases in Australia and New Zealand.\nMETHODS: A web-based registry, The Australasian Registry Network of Orphan Lung Diseases (ARNOLD) was developed based on the existing British Paediatric Orphan Lung Disease Registry. All adult and paediatric respiratory physicians who were members of the Thoracic Society of Australia and New Zealand in Australia and New Zealand were sent regular emails between July 2009 and June 2014 requesting information on patients they had seen with any of 30 rare lung diseases. Prevalence rates were calculated using population statistics.\nRESULTS: Emails were sent to 649 Australian respiratory physicians and 65 in New Zealand. 231 (32.4%) physicians responded to emails a total of 1554 times (average 7.6 responses per physician). Prevalence rates of 30 rare lung diseases are reported.\nCONCLUSIONS: A multi-disease rare lung disease registry was implemented in the Australian and New Zealand health care settings that provided prevalence data on orphan lung diseases in this region but was limited by under reporting.",
"genre": "research_article",
"id": "sg:pub.10.1186/s13023-016-0389-z",
"inLanguage": [
"en"
],
"isAccessibleForFree": true,
"isPartOf": [
{
"id": "sg:journal.1036535",
"issn": [
"1750-1172"
],
"name": "Orphanet Journal of Rare Diseases",
"type": "Periodical"
},
{
"issueNumber": "1",
"type": "PublicationIssue"
},
{
"type": "PublicationVolume",
"volumeNumber": "11"
}
],
"name": "Assessing the feasibility of a web-based registry for multiple orphan lung diseases: the Australasian Registry Network for Orphan Lung Disease (ARNOLD) experience",
"pagination": "42",
"productId": [
{
"name": "readcube_id",
"type": "PropertyValue",
"value": [
"61e46c1c9797d27b4027684f83dcca4b2e51f3627e2d88be2a57d93ccf16dc5f"
]
},
{
"name": "pubmed_id",
"type": "PropertyValue",
"value": [
"27090393"
]
},
{
"name": "nlm_unique_id",
"type": "PropertyValue",
"value": [
"101266602"
]
},
{
"name": "doi",
"type": "PropertyValue",
"value": [
"10.1186/s13023-016-0389-z"
]
},
{
"name": "dimensions_id",
"type": "PropertyValue",
"value": [
"pub.1020544870"
]
}
],
"sameAs": [
"https://doi.org/10.1186/s13023-016-0389-z",
"https://app.dimensions.ai/details/publication/pub.1020544870"
],
"sdDataset": "articles",
"sdDatePublished": "2019-04-10T18:20",
"sdLicense": "https://scigraph.springernature.com/explorer/license/",
"sdPublisher": {
"name": "Springer Nature - SN SciGraph project",
"type": "Organization"
},
"sdSource": "s3://com-uberresearch-data-dimensions-target-20181106-alternative/cleanup/v134/2549eaecd7973599484d7c17b260dba0a4ecb94b/merge/v9/a6c9fde33151104705d4d7ff012ea9563521a3ce/jats-lookup/v90/0000000001_0000000264/records_8675_00000512.jsonl",
"type": "ScholarlyArticle",
"url": "http://link.springer.com/10.1186%2Fs13023-016-0389-z"
}
]Download the RDF metadata as: json-ld nt turtle xml License info
JSON-LD is a popular format for linked data which is fully compatible with JSON.
curl -H 'Accept: application/ld+json' 'https://scigraph.springernature.com/pub.10.1186/s13023-016-0389-z'
N-Triples is a line-based linked data format ideal for batch operations.
curl -H 'Accept: application/n-triples' 'https://scigraph.springernature.com/pub.10.1186/s13023-016-0389-z'
Turtle is a human-readable linked data format.
curl -H 'Accept: text/turtle' 'https://scigraph.springernature.com/pub.10.1186/s13023-016-0389-z'
RDF/XML is a standard XML format for linked data.
curl -H 'Accept: application/rdf+xml' 'https://scigraph.springernature.com/pub.10.1186/s13023-016-0389-z'
This table displays all metadata directly associated to this object as RDF triples.
216 TRIPLES
21 PREDICATES
53 URIs
28 LITERALS
16 BLANK NODES