{"id":"https://openalex.org/W4387310286","doi":"https://doi.org/10.1016/j.nmd.2023.07.221","title":"P311 Facioscapulohumeral muscular dystrophy European patient survey: assessing patient preferences in clinical trial participation","display_name":"P311 Facioscapulohumeral muscular dystrophy European patient survey: assessing patient preferences in clinical trial participation","publication_year":2023,"publication_date":"2023-10-01","ids":{"openalex":"https://openalex.org/W4387310286","doi":"https://doi.org/10.1016/j.nmd.2023.07.221"},"language":"en","primary_location":{"id":"doi:10.1016/j.nmd.2023.07.221","doi":"https://doi.org/10.1016/j.nmd.2023.07.221","is_oa":false,"landing_page_url":"https://doi.org/10.1016/j.nmd.2023.07.221","pdf_url":null,"source":{"id":"https://openalex.org/S50004817","display_name":"Neuromuscular Disorders","issn_l":"0960-8966","issn":["0960-8966","1873-2364"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","dongbi-b","doyens","jufo-1","ki-jl-1","medline","norway-1","poland-100","russia-white-list-2","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":"Neuromuscular Disorders","raw_type":"journal-article"},"volume":null,"type":"conference-abstract","is_traditional":false,"indexed_in":["crossref"],"open_access":{"is_oa":false,"oa_status":"closed","oa_url":null,"any_repository_has_fulltext":false},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5088000276","display_name":"Megan M. McNiff","orcid":"https://orcid.org/0000-0002-4592-9919","observed_orcids":["https://orcid.org/0000-0002-4592-9919"]},"institutions":[{"id":"https://openalex.org/I2801663869","display_name":"Newcastle upon Tyne Hospitals NHS Foundation Trust","ror":"https://ror.org/05p40t847","country_code":"GB","type":"healthcare","lineage":["https://openalex.org/I2801663869"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"M. McNiff","raw_affiliation_strings":["John Walton Muscular Dystrophy Research Centre, Translational and Clinical Research Institute, Newcastle Univ and Newcastle Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"John Walton Muscular Dystrophy Research Centre, Translational and Clinical Research Institute, Newcastle Univ and Newcastle Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK","institution_ids":["https://openalex.org/I2801663869"]}]},{"author_position":"middle","author":{"id":null,"display_name":"S. Hawkins","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"S. Hawkins","raw_affiliation_strings":["FSHD Europe, Nijmegen, Netherlands"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"FSHD Europe, Nijmegen, Netherlands","institution_ids":[]}]},{"author_position":"middle","author":{"id":null,"display_name":"B. Haase","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"B. Haase","raw_affiliation_strings":["FSHD Europe, Nijmegen, Netherlands"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"FSHD Europe, Nijmegen, Netherlands","institution_ids":[]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5090918725","display_name":"J. Bullivant","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I2801663869","display_name":"Newcastle upon Tyne Hospitals NHS Foundation Trust","ror":"https://ror.org/05p40t847","country_code":"GB","type":"healthcare","lineage":["https://openalex.org/I2801663869"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"J. Bullivant","raw_affiliation_strings":["John Walton Muscular Dystrophy Research Centre, Translational and Clinical Research Institute, Newcastle Univ and Newcastle Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"John Walton Muscular Dystrophy Research Centre, Translational and Clinical Research Institute, Newcastle Univ and Newcastle Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK","institution_ids":["https://openalex.org/I2801663869"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5077118986","display_name":"McIver Tammy","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I4210113058","display_name":"Roche (United Kingdom)","ror":"https://ror.org/024tgbv41","country_code":"GB","type":"company","lineage":["https://openalex.org/I118019719","https://openalex.org/I4210113058"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"T. McIver","raw_affiliation_strings":["F. Hoffmann-La Roche Ltd, Welwyn Garden City, UK"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"F. Hoffmann-La Roche Ltd, Welwyn Garden City, UK","institution_ids":["https://openalex.org/I4210113058"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5027201190","display_name":"Olga Mitelman","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"O. Mitelman","raw_affiliation_strings":["Fulcrum Therapeutics, UK"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Fulcrum Therapeutics, UK","institution_ids":[]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5070437176","display_name":"Nicholas C Emery","orcid":"https://orcid.org/0000-0001-9606-0574","observed_orcids":["https://orcid.org/0000-0001-9606-0574"]},"institutions":[{"id":"https://openalex.org/I2802478169","display_name":"Robert Jones and Agnes Hunt Orthopaedic Hospital","ror":"https://ror.org/030mbcp39","country_code":"GB","type":"healthcare","lineage":["https://openalex.org/I2802478169","https://openalex.org/I4210155739"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"N. Emery","raw_affiliation_strings":["The Robert Jones and Agnes Hunt Orthopaedic Hospital, Oswestry, UK"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"The Robert Jones and Agnes Hunt Orthopaedic Hospital, Oswestry, UK","institution_ids":["https://openalex.org/I2802478169"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5066411369","display_name":"Giorgio A. Tasca","orcid":"https://orcid.org/0000-0003-0849-9144","observed_orcids":["https://orcid.org/0000-0003-0849-9144","https://orcid.org/0000-0001-7596-0661"]},"institutions":[{"id":"https://openalex.org/I2801663869","display_name":"Newcastle upon Tyne Hospitals NHS Foundation Trust","ror":"https://ror.org/05p40t847","country_code":"GB","type":"healthcare","lineage":["https://openalex.org/I2801663869"]},{"id":"https://openalex.org/I2802557943","display_name":"Agostino Gemelli University Polyclinic","ror":"https://ror.org/00rg70c39","country_code":"IT","type":"healthcare","lineage":["https://openalex.org/I2802557943"]}],"countries":["GB","IT"],"is_corresponding":false,"raw_author_name":"G. Tasca","raw_affiliation_strings":["John Walton Muscular Dystrophy Research Centre, Translational and Clinical Research Institute, Newcastle Univ and Newcastle Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK","Unit\u00e0 Operativa Complessa di Neurologia, Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"John Walton Muscular Dystrophy Research Centre, Translational and Clinical Research Institute, Newcastle Univ and Newcastle Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK","institution_ids":["https://openalex.org/I2801663869"]},{"raw_affiliation_string":"Unit\u00e0 Operativa Complessa di Neurologia, Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy","institution_ids":["https://openalex.org/I2802557943"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5012105654","display_name":"Nicol Cornelia Voermans","orcid":"https://orcid.org/0000-0002-5837-7295","observed_orcids":["https://orcid.org/0000-0002-5837-7295"]},"institutions":[{"id":"https://openalex.org/I145872427","display_name":"Radboud University Nijmegen","ror":"https://ror.org/016xsfp80","country_code":"NL","type":"education","lineage":["https://openalex.org/I145872427"]},{"id":"https://openalex.org/I2802934949","display_name":"Radboud University Medical Center","ror":"https://ror.org/05wg1m734","country_code":"NL","type":"healthcare","lineage":["https://openalex.org/I2802934949"]},{"id":"https://openalex.org/I4405261313","display_name":"Donders Institute for Brain, Cognition and Behaviour","ror":"https://ror.org/053sba816","country_code":"NL","type":"facility","lineage":["https://openalex.org/I145872427","https://openalex.org/I4405261313"]}],"countries":["NL"],"is_corresponding":false,"raw_author_name":"N. Voermans","raw_affiliation_strings":["Dept Neurology, Donders Inst for Brain, Cognition & Behaviour, Radboud Univ Med Center, Nijmegen, NL","FSHD Europe, Nijmegen, Netherlands"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Dept Neurology, Donders Inst for Brain, Cognition & Behaviour, Radboud Univ Med Center, Nijmegen, NL","institution_ids":["https://openalex.org/I145872427","https://openalex.org/I2802934949","https://openalex.org/I4405261313"]},{"raw_affiliation_string":"FSHD Europe, Nijmegen, Netherlands","institution_ids":[]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5074226481","display_name":"Jordi D\u00edaz\u2010Manera","orcid":"https://orcid.org/0000-0003-2941-7988","observed_orcids":["https://orcid.org/0000-0003-2941-7988"]},"institutions":[{"id":"https://openalex.org/I2801663869","display_name":"Newcastle upon Tyne Hospitals NHS Foundation Trust","ror":"https://ror.org/05p40t847","country_code":"GB","type":"healthcare","lineage":["https://openalex.org/I2801663869"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"J. Diaz-Manera","raw_affiliation_strings":["John Walton Muscular Dystrophy Research Centre, Translational and Clinical Research Institute, Newcastle Univ and Newcastle Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"John Walton Muscular Dystrophy Research Centre, Translational and Clinical Research Institute, Newcastle Univ and Newcastle Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK","institution_ids":["https://openalex.org/I2801663869"]}]}],"institutions":[],"countries_distinct_count":3,"institutions_distinct_count":7,"corresponding_author_ids":[],"corresponding_institution_ids":[],"apc_list":{"value":3620,"currency":"USD","value_usd":3620},"apc_paid":null,"fwci":null,"has_fulltext":false,"cited_by_count":0,"citation_normalized_percentile":null,"cited_by_percentile_year":null,"biblio":{"volume":"33","issue":null,"first_page":"S121","last_page":"S121"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10441","display_name":"Muscle Physiology and Disorders","score":0.5547000169754028,"subfield":{"id":"https://openalex.org/subfields/1312","display_name":"Molecular Biology"},"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/T10441","display_name":"Muscle Physiology and Disorders","score":0.5547000169754028,"subfield":{"id":"https://openalex.org/subfields/1312","display_name":"Molecular Biology"},"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/T10582","display_name":"Ethics in Clinical Research","score":0.26829999685287476,"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"}},{"id":"https://openalex.org/T12400","display_name":"Neurogenetic and Muscular Disorders Research","score":0.08940000087022781,"subfield":{"id":"https://openalex.org/subfields/2716","display_name":"Genetics (clinical)"},"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/facioscapulohumeral-muscular-dystrophy","display_name":"facioscapulohumeral muscular dystrophy","score":1.0},{"id":"https://openalex.org/keywords/patient-preferences","display_name":"patient preferences","score":0.8460000157356262},{"id":"https://openalex.org/keywords/clinical-trial-participation","display_name":"clinical trial participation","score":0.9959999918937683},{"id":"https://openalex.org/keywords/patient-centered-outcome-measures","display_name":"patient-centered outcome measures","score":0.7049999833106995},{"id":"https://openalex.org/keywords/unmet-healthcare-needs","display_name":"unmet health needs","score":0.8709999918937683},{"id":"https://openalex.org/keywords/muscle-weakness","display_name":"muscle weakness","score":0.746999979019165},{"id":"https://openalex.org/keywords/mobility-impairment","display_name":"mobility impairment","score":0.8450000286102295},{"id":"https://openalex.org/keywords/fear-of-side-effects","display_name":"fear of side effects","score":0.7450000047683716},{"id":"https://openalex.org/keywords/travel-barriers","display_name":"travel barriers","score":0.6959999799728394}],"concepts":[{"id":"https://openalex.org/C2779981540","wikidata":"https://www.wikidata.org/wiki/Q1399182","display_name":"Facioscapulohumeral muscular dystrophy","level":3,"score":0.9744570851325989},{"id":"https://openalex.org/C535046627","wikidata":"https://www.wikidata.org/wiki/Q30612","display_name":"Clinical trial","level":2,"score":0.7960219383239746},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.768416166305542},{"id":"https://openalex.org/C2780247198","wikidata":"https://www.wikidata.org/wiki/Q633403","display_name":"Weakness","level":2,"score":0.6854438781738281},{"id":"https://openalex.org/C2779030066","wikidata":"https://www.wikidata.org/wiki/Q1137767","display_name":"Muscular dystrophy","level":2,"score":0.5745066404342651},{"id":"https://openalex.org/C1862650","wikidata":"https://www.wikidata.org/wiki/Q186005","display_name":"Physical therapy","level":1,"score":0.5072343349456787},{"id":"https://openalex.org/C2776418732","wikidata":"https://www.wikidata.org/wiki/Q270421","display_name":"Muscle weakness","level":2,"score":0.49551498889923096},{"id":"https://openalex.org/C99508421","wikidata":"https://www.wikidata.org/wiki/Q2678675","display_name":"Physical medicine and rehabilitation","level":1,"score":0.44794440269470215},{"id":"https://openalex.org/C2779134260","wikidata":"https://www.wikidata.org/wiki/Q12136","display_name":"Disease","level":2,"score":0.41649138927459717},{"id":"https://openalex.org/C126322002","wikidata":"https://www.wikidata.org/wiki/Q11180","display_name":"Internal medicine","level":1,"score":0.14611640572547913},{"id":"https://openalex.org/C141071460","wikidata":"https://www.wikidata.org/wiki/Q40821","display_name":"Surgery","level":1,"score":0.10994154214859009}],"mesh":[],"locations_count":1,"locations":[{"id":"doi:10.1016/j.nmd.2023.07.221","doi":"https://doi.org/10.1016/j.nmd.2023.07.221","is_oa":false,"landing_page_url":"https://doi.org/10.1016/j.nmd.2023.07.221","pdf_url":null,"source":{"id":"https://openalex.org/S50004817","display_name":"Neuromuscular Disorders","issn_l":"0960-8966","issn":["0960-8966","1873-2364"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","dongbi-b","doyens","jufo-1","ki-jl-1","medline","norway-1","poland-100","russia-white-list-2","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":"Neuromuscular Disorders","raw_type":"journal-article"}],"best_oa_location":null,"sustainable_development_goals":[{"id":"https://metadata.un.org/sdg/3","score":1.0,"display_name":"Good health and well-being"}],"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/W4391251581","https://openalex.org/W4389465437","https://openalex.org/W4408144201","https://openalex.org/W2731791598","https://openalex.org/W7214750117","https://openalex.org/W4407319414","https://openalex.org/W4388312301","https://openalex.org/W2976535059","https://openalex.org/W7212341611","https://openalex.org/W7168995243"],"abstract_inverted_index":null,"counts_by_year":[],"updated_date":"2026-11-10T11:39:43.021295","created_date":"2023-10-04T00:00:00"}