{"id":"https://openalex.org/W2128317172","doi":"https://doi.org/10.1016/j.jval.2013.08.344","title":"Health and Social Care Resource Use by Individuals with Fragile X Syndrome: Results of Two Delphi Panels","display_name":"Health and Social Care Resource Use by Individuals with Fragile X Syndrome: Results of Two Delphi Panels","publication_year":2013,"publication_date":"2013-10-22","ids":{"openalex":"https://openalex.org/W2128317172","doi":"https://doi.org/10.1016/j.jval.2013.08.344","mag":"2128317172"},"language":"en","primary_location":{"id":"doi:10.1016/j.jval.2013.08.344","doi":"https://doi.org/10.1016/j.jval.2013.08.344","is_oa":true,"landing_page_url":"https://doi.org/10.1016/j.jval.2013.08.344","pdf_url":null,"source":{"id":"https://openalex.org/S678965","display_name":"Value in Health","issn_l":"1098-3015","issn":["1098-3015","1524-4733"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["abdc-a","anvur-class-a","anvur-scientific","cwts-core","dongbi-a","doyens","jufo-2","ki-jl-2","medline","norway-2","poland-140","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310320990","host_organization_name":"Elsevier BV","host_organization_lineage":["https://openalex.org/P4310320990"],"host_organization_lineage_names":["Elsevier BV"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Value in Health","raw_type":"journal-article"},"volume":null,"type":"article","is_traditional":true,"indexed_in":["crossref"],"open_access":{"is_oa":true,"oa_status":"bronze","oa_url":"https://doi.org/10.1016/j.jval.2013.08.344","any_repository_has_fulltext":false},"authorships":[{"author_position":"first","author":{"id":null,"display_name":"S.J Barry","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"S.J Barry","raw_affiliation_strings":["Optum, Burlington, ON, Canada"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Optum, Burlington, ON, Canada","institution_ids":[]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5065326943","display_name":"Paul A. London","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"P. London","raw_affiliation_strings":["Optum, Chicago, IL, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Optum, Chicago, IL, USA","institution_ids":[]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5080465861","display_name":"Tanya Bostock","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"T. Bostock","raw_affiliation_strings":["Optum, Burlington, ON, Canada"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Optum, Burlington, ON, Canada","institution_ids":[]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5060223156","display_name":"Nicholas Adlard","orcid":"https://orcid.org/0000-0001-6912-1685","observed_orcids":["https://orcid.org/0000-0001-6912-1685"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"N. Adlard","raw_affiliation_strings":["Novartis Pharmaceuticals UK, Surrey, UK"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Novartis Pharmaceuticals UK, Surrey, UK","institution_ids":[]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5056516185","display_name":"K. Lakhdari","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I4210161737","display_name":"Novartis (Canada)","ror":"https://ror.org/05afs3z13","country_code":"CA","type":"company","lineage":["https://openalex.org/I1283582996","https://openalex.org/I4210161737"]}],"countries":["CA"],"is_corresponding":false,"raw_author_name":"K. Lakhdari","raw_affiliation_strings":["Novartis Pharmaceuticals Canada, Montreal, QC, Canada"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Novartis Pharmaceuticals Canada, Montreal, QC, Canada","institution_ids":["https://openalex.org/I4210161737"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5053472444","display_name":"Gudrun Aubertin","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I141945490","display_name":"University of British Columbia","ror":"https://ror.org/03rmrcq20","country_code":"CA","type":"education","lineage":["https://openalex.org/I141945490"]}],"countries":["CA"],"is_corresponding":false,"raw_author_name":"G. Aubertin","raw_affiliation_strings":["University of British Columbia, Victoria, BC, Canada"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"University of British Columbia, Victoria, BC, Canada","institution_ids":["https://openalex.org/I141945490"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5036062805","display_name":"Philip Burge","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I204722609","display_name":"Queen's University","ror":"https://ror.org/02y72wh86","country_code":"CA","type":"education","lineage":["https://openalex.org/I204722609"]}],"countries":["CA"],"is_corresponding":false,"raw_author_name":"P. Burge","raw_affiliation_strings":["Queen\u2019s University, Kingston, ON, Canada","Queen's Univ., Kingston, ON (Canada)"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Queen\u2019s University, Kingston, ON, Canada","institution_ids":["https://openalex.org/I204722609"]},{"raw_affiliation_string":"Queen's Univ., Kingston, ON (Canada)","institution_ids":["https://openalex.org/I204722609"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5032491677","display_name":"Joanie Corbin","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I135117807","display_name":"Universit\u00e9 de Sherbrooke","ror":"https://ror.org/00kybxq39","country_code":"CA","type":"education","lineage":["https://openalex.org/I135117807"]}],"countries":["CA"],"is_corresponding":false,"raw_author_name":"J.F. Corbin","raw_affiliation_strings":["University de Sherbrooke, Sherbrooke, QC, Canada","Univ. de Sherbrooke, Sherbrooke, QC (Canada)"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"University de Sherbrooke, Sherbrooke, QC, Canada","institution_ids":["https://openalex.org/I135117807"]},{"raw_affiliation_string":"Univ. de Sherbrooke, Sherbrooke, QC (Canada)","institution_ids":["https://openalex.org/I135117807"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5101990191","display_name":"Susie Gagnon","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I135117807","display_name":"Universit\u00e9 de Sherbrooke","ror":"https://ror.org/00kybxq39","country_code":"CA","type":"education","lineage":["https://openalex.org/I135117807"]}],"countries":["CA"],"is_corresponding":false,"raw_author_name":"S. Gagnon","raw_affiliation_strings":["University de Sherbrooke, Sherbrooke, QC, Canada","Univ. de Sherbrooke, Sherbrooke, QC (Canada)"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"University de Sherbrooke, Sherbrooke, QC, Canada","institution_ids":["https://openalex.org/I135117807"]},{"raw_affiliation_string":"Univ. de Sherbrooke, Sherbrooke, QC (Canada)","institution_ids":["https://openalex.org/I135117807"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5064764963","display_name":"Angela Hassiotis","orcid":"https://orcid.org/0000-0002-9800-3909","observed_orcids":["https://orcid.org/0000-0002-9800-3909"]},"institutions":[{"id":"https://openalex.org/I45129253","display_name":"University College London","ror":"https://ror.org/02jx3x895","country_code":"GB","type":"education","lineage":["https://openalex.org/I124357947","https://openalex.org/I45129253"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"A. Hassiotis","raw_affiliation_strings":["University College London, London, UK","Univ. College London London UK"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"University College London, London, UK","institution_ids":["https://openalex.org/I45129253"]},{"raw_affiliation_string":"Univ. College London London UK","institution_ids":["https://openalex.org/I45129253"]}]}],"institutions":[],"countries_distinct_count":2,"institutions_distinct_count":5,"corresponding_author_ids":[],"corresponding_institution_ids":[],"apc_list":{"value":4000,"currency":"USD","value_usd":4000},"apc_paid":null,"fwci":0.0,"has_fulltext":false,"cited_by_count":0,"citation_normalized_percentile":{"value":0.0,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":null,"biblio":{"volume":"16","issue":"7","first_page":"A382","last_page":"A382"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T11772","display_name":"Genetics and Neurodevelopmental Disorders","score":0.6718999743461609,"subfield":{"id":"https://openalex.org/subfields/1311","display_name":"Genetics"},"field":{"id":"https://openalex.org/fields/13","display_name":"Biochemistry, Genetics and Molecular Biology"},"domain":{"id":"https://openalex.org/domains/1","display_name":"Life Sciences"}},"topics":[{"id":"https://openalex.org/T11772","display_name":"Genetics and Neurodevelopmental Disorders","score":0.6718999743461609,"subfield":{"id":"https://openalex.org/subfields/1311","display_name":"Genetics"},"field":{"id":"https://openalex.org/fields/13","display_name":"Biochemistry, Genetics and Molecular Biology"},"domain":{"id":"https://openalex.org/domains/1","display_name":"Life Sciences"}},{"id":"https://openalex.org/T10804","display_name":"Health Systems, Economic Evaluations, Quality of Life","score":0.2847000062465668,"subfield":{"id":"https://openalex.org/subfields/2002","display_name":"Economics and Econometrics"},"field":{"id":"https://openalex.org/fields/20","display_name":"Economics, Econometrics and Finance"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}},{"id":"https://openalex.org/T11015","display_name":"Down syndrome and intellectual disability research","score":0.02199999988079071,"subfield":{"id":"https://openalex.org/subfields/2739","display_name":"Public Health, Environmental and Occupational Health"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/fragile-x-syndrome","display_name":"fragile X syndrome","score":0.9810000061988831},{"id":"https://openalex.org/keywords/health-care-utilization","display_name":"health care utilization","score":0.8980000019073486},{"id":"https://openalex.org/keywords/intellectual-disability","display_name":"intellectual disability","score":0.9929999709129333},{"id":"https://openalex.org/keywords/delphi-consensus","display_name":"Delphi consensus","score":0.6840000152587891},{"id":"https://openalex.org/keywords/health-care-costs","display_name":"health care costs","score":0.5709999799728394},{"id":"https://openalex.org/keywords/canada","display_name":"Canada","score":0.6240000128746033},{"id":"https://openalex.org/keywords/united-kingdom","display_name":"United Kingdom","score":1.0}],"concepts":[{"id":"https://openalex.org/C44249647","wikidata":"https://www.wikidata.org/wiki/Q208498","display_name":"Confidence interval","level":2,"score":0.7137839794158936},{"id":"https://openalex.org/C2779356329","wikidata":"https://www.wikidata.org/wiki/Q922625","display_name":"Checklist","level":2,"score":0.6716516613960266},{"id":"https://openalex.org/C60641444","wikidata":"https://www.wikidata.org/wiki/Q841602","display_name":"Delphi method","level":2,"score":0.5368192195892334},{"id":"https://openalex.org/C149923435","wikidata":"https://www.wikidata.org/wiki/Q37732","display_name":"Demography","level":1,"score":0.5195070505142212},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.47573021054267883},{"id":"https://openalex.org/C2780148112","wikidata":"https://www.wikidata.org/wiki/Q1432581","display_name":"Proxy (statistics)","level":2,"score":0.47382816672325134},{"id":"https://openalex.org/C15744967","wikidata":"https://www.wikidata.org/wiki/Q9418","display_name":"Psychology","level":0,"score":0.44344601035118103},{"id":"https://openalex.org/C206345919","wikidata":"https://www.wikidata.org/wiki/Q20380951","display_name":"Resource (disambiguation)","level":2,"score":0.41100698709487915},{"id":"https://openalex.org/C105795698","wikidata":"https://www.wikidata.org/wiki/Q12483","display_name":"Statistics","level":1,"score":0.2557912766933441},{"id":"https://openalex.org/C33923547","wikidata":"https://www.wikidata.org/wiki/Q395","display_name":"Mathematics","level":0,"score":0.13702735304832458},{"id":"https://openalex.org/C41008148","wikidata":"https://www.wikidata.org/wiki/Q21198","display_name":"Computer science","level":0,"score":0.10527962446212769},{"id":"https://openalex.org/C144024400","wikidata":"https://www.wikidata.org/wiki/Q21201","display_name":"Sociology","level":0,"score":0.08743751049041748},{"id":"https://openalex.org/C31258907","wikidata":"https://www.wikidata.org/wiki/Q1301371","display_name":"Computer network","level":1,"score":0.0},{"id":"https://openalex.org/C180747234","wikidata":"https://www.wikidata.org/wiki/Q23373","display_name":"Cognitive psychology","level":1,"score":0.0},{"id":"https://openalex.org/C126322002","wikidata":"https://www.wikidata.org/wiki/Q11180","display_name":"Internal medicine","level":1,"score":0.0}],"mesh":[],"locations_count":1,"locations":[{"id":"doi:10.1016/j.jval.2013.08.344","doi":"https://doi.org/10.1016/j.jval.2013.08.344","is_oa":true,"landing_page_url":"https://doi.org/10.1016/j.jval.2013.08.344","pdf_url":null,"source":{"id":"https://openalex.org/S678965","display_name":"Value in Health","issn_l":"1098-3015","issn":["1098-3015","1524-4733"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["abdc-a","anvur-class-a","anvur-scientific","cwts-core","dongbi-a","doyens","jufo-2","ki-jl-2","medline","norway-2","poland-140","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310320990","host_organization_name":"Elsevier BV","host_organization_lineage":["https://openalex.org/P4310320990"],"host_organization_lineage_names":["Elsevier BV"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Value in Health","raw_type":"journal-article"}],"best_oa_location":{"id":"doi:10.1016/j.jval.2013.08.344","doi":"https://doi.org/10.1016/j.jval.2013.08.344","is_oa":true,"landing_page_url":"https://doi.org/10.1016/j.jval.2013.08.344","pdf_url":null,"source":{"id":"https://openalex.org/S678965","display_name":"Value in Health","issn_l":"1098-3015","issn":["1098-3015","1524-4733"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["abdc-a","anvur-class-a","anvur-scientific","cwts-core","dongbi-a","doyens","jufo-2","ki-jl-2","medline","norway-2","poland-140","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310320990","host_organization_name":"Elsevier BV","host_organization_lineage":["https://openalex.org/P4310320990"],"host_organization_lineage_names":["Elsevier BV"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Value in Health","raw_type":"journal-article"},"sustainable_development_goals":[{"score":0.98580002784729,"display_name":"Good health and well-being","id":"https://metadata.un.org/sdg/3"}],"study_designs":[],"awards":[],"funders":[],"has_content":{"pdf":false,"grobid_xml":false},"content_urls":null,"referenced_works_count":0,"referenced_works":[],"related_works":["https://openalex.org/W2234207112","https://openalex.org/W1966924846","https://openalex.org/W4380150353","https://openalex.org/W2134267363","https://openalex.org/W4380150555","https://openalex.org/W1841770110","https://openalex.org/W7166245615","https://openalex.org/W4412442936","https://openalex.org/W2200128995","https://openalex.org/W2898715990"],"abstract_inverted_index":null,"counts_by_year":[],"updated_date":"2026-10-30T12:39:25.321706","created_date":"2016-06-24T00:00:00"}