{"id":"https://openalex.org/W7214766841","doi":"https://doi.org/10.1016/j.nmd.2026.107339","title":"4.88P A multi-stakeholder communication strategy to accelerate recruitment and engagement in the DM1-Hub, the myotonic dystrophy type 1 natural history registry","display_name":"4.88P A multi-stakeholder communication strategy to accelerate recruitment and engagement in the DM1-Hub, the myotonic dystrophy type 1 natural history registry","publication_year":2026,"publication_date":"2026-09-29","ids":{"openalex":"https://openalex.org/W7214766841","doi":"https://doi.org/10.1016/j.nmd.2026.107339"},"language":"en","primary_location":{"id":"doi:10.1016/j.nmd.2026.107339","doi":"https://doi.org/10.1016/j.nmd.2026.107339","is_oa":false,"landing_page_url":"https://doi.org/10.1016/j.nmd.2026.107339","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":"article","is_traditional":true,"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/A5153463822","display_name":"Usue Laresgoiti Garay","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Usue Laresgoiti Garay","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":null,"display_name":"Alvaro S. Larran","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Alvaro S. Larran","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5063645645","display_name":"Alba Herrero-G\u00f3mez","orcid":"https://orcid.org/0000-0002-8807-0649","observed_orcids":["https://orcid.org/0000-0002-8807-0649"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Alba Herrero G\u00f3mez","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5064599021","display_name":"Marc Corral\u2010Juan","orcid":"https://orcid.org/0000-0001-9407-7516","observed_orcids":["https://orcid.org/0000-0001-9407-7516"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Marc Corral-Juan","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5054141890","display_name":"Daniel Borr\u00e0s","orcid":"https://orcid.org/0000-0002-6830-2609","observed_orcids":["https://orcid.org/0000-0002-6830-2609"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Daniel Borras","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5153431994","display_name":"Clara Moliner","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Clara Moliner","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5135956773","display_name":"Luis Ordu\u00f1a","orcid":"https://orcid.org/0000-0003-2756-4028","observed_orcids":["https://orcid.org/0000-0003-2756-4028"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Luis Ordu\u00f1a","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5002413753","display_name":"Gerardo Guti\u00e9rrez\u2010Guti\u00e9rrez","orcid":"https://orcid.org/0000-0003-1391-754X","observed_orcids":["https://orcid.org/0000-0003-1391-754X"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Gerardo Guti\u00e9rrez-Guti\u00e9rrez","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5002468839","display_name":"Luisa Tenorio","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Luisa Tenorio","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5007997345","display_name":"Bibiana Chinea Jim\u00e9nez","orcid":"https://orcid.org/0000-0003-3655-9423","observed_orcids":["https://orcid.org/0000-0003-3655-9423"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Bibiana Chinea Jimenez","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5091984873","display_name":"Javier Baigorri","orcid":"https://orcid.org/0000-0002-2994-8458","observed_orcids":["https://orcid.org/0000-0002-2994-8458"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Javier Baigorri","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5087993434","display_name":"Virginia Arechavala\u2010Gomeza","orcid":"https://orcid.org/0000-0001-7703-3255","observed_orcids":["https://orcid.org/0000-0001-7703-3255"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Virginia Arechavala-Gomeza","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5073155829","display_name":"A L\u00f3pez","orcid":"https://orcid.org/0000-0003-1529-2635","observed_orcids":["https://orcid.org/0000-0003-1529-2635"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Arturo L\u00f3pez-Castel","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"last","author":{"id":"https://openalex.org/A5000772711","display_name":"Gisela Nogales\u2010Gadea","orcid":"https://orcid.org/0000-0002-7414-212X","observed_orcids":["https://orcid.org/0000-0002-7414-212X"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Gisela Nogales-Gadea","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]}],"institutions":[],"countries_distinct_count":0,"institutions_distinct_count":0,"corresponding_author_ids":[],"corresponding_institution_ids":[],"apc_list":{"value":3470,"currency":"USD","value_usd":3470},"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":"67","issue":null,"first_page":"107339","last_page":"107339"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10949","display_name":"Genetic Neurodegenerative Diseases","score":0.7490000128746033,"subfield":{"id":"https://openalex.org/subfields/2804","display_name":"Cellular and Molecular Neuroscience"},"field":{"id":"https://openalex.org/fields/28","display_name":"Neuroscience"},"domain":{"id":"https://openalex.org/domains/1","display_name":"Life Sciences"}},"topics":[{"id":"https://openalex.org/T10949","display_name":"Genetic Neurodegenerative Diseases","score":0.7490000128746033,"subfield":{"id":"https://openalex.org/subfields/2804","display_name":"Cellular and Molecular Neuroscience"},"field":{"id":"https://openalex.org/fields/28","display_name":"Neuroscience"},"domain":{"id":"https://openalex.org/domains/1","display_name":"Life Sciences"}},{"id":"https://openalex.org/T10582","display_name":"Ethics in Clinical Research","score":0.1981000006198883,"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/T12027","display_name":"Social Media in Health Education","score":0.008100000210106373,"subfield":{"id":"https://openalex.org/subfields/3306","display_name":"Health"},"field":{"id":"https://openalex.org/fields/33","display_name":"Social Sciences"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/myotonic-dystrophy-type-1","display_name":"myotonic dystrophy type 1","score":0.9660000205039978},{"id":"https://openalex.org/keywords/patient-recruitment","display_name":"patient recruitment","score":0.8050000071525574},{"id":"https://openalex.org/keywords/patient-engagement","display_name":"patient engagement","score":0.8970000147819519},{"id":"https://openalex.org/keywords/patient-registry","display_name":"patient registry","score":0.5590000152587891}],"concepts":[{"id":"https://openalex.org/C2778063965","wikidata":"https://www.wikidata.org/wiki/Q1860507","display_name":"Myotonic dystrophy","level":2,"score":0.8357999920845032},{"id":"https://openalex.org/C163276114","wikidata":"https://www.wikidata.org/wiki/Q484591","display_name":"Natural history","level":2,"score":0.815500020980835},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.690500020980835},{"id":"https://openalex.org/C2778279407","wikidata":"https://www.wikidata.org/wiki/Q6980711","display_name":"Natural history study","level":3,"score":0.6588000059127808},{"id":"https://openalex.org/C99508421","wikidata":"https://www.wikidata.org/wiki/Q2678675","display_name":"Physical medicine and rehabilitation","level":1,"score":0.4641000032424927},{"id":"https://openalex.org/C74909509","wikidata":"https://www.wikidata.org/wiki/Q10387","display_name":"Gerontology","level":1,"score":0.34709998965263367},{"id":"https://openalex.org/C2776608160","wikidata":"https://www.wikidata.org/wiki/Q4785462","display_name":"Natural (archaeology)","level":2,"score":0.3361999988555908},{"id":"https://openalex.org/C1862650","wikidata":"https://www.wikidata.org/wiki/Q186005","display_name":"Physical therapy","level":1,"score":0.2782000005245209},{"id":"https://openalex.org/C187212893","wikidata":"https://www.wikidata.org/wiki/Q123028","display_name":"Pediatrics","level":1,"score":0.26499998569488525},{"id":"https://openalex.org/C2992477034","wikidata":"https://www.wikidata.org/wiki/Q83042","display_name":"Clinical neurology","level":2,"score":0.25360000133514404}],"mesh":[],"locations_count":1,"locations":[{"id":"doi:10.1016/j.nmd.2026.107339","doi":"https://doi.org/10.1016/j.nmd.2026.107339","is_oa":false,"landing_page_url":"https://doi.org/10.1016/j.nmd.2026.107339","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":[{"display_name":"Good health and well-being","score":0.5683000087738037,"id":"https://metadata.un.org/sdg/3"}],"study_designs":[],"awards":[],"funders":[],"has_content":{"grobid_xml":false,"pdf":false},"content_urls":null,"referenced_works_count":0,"referenced_works":[],"related_works":["https://openalex.org/W7214761204","https://openalex.org/W2799880568","https://openalex.org/W2799902545","https://openalex.org/W7214755435","https://openalex.org/W4403112194","https://openalex.org/W7214705751","https://openalex.org/W7214731600","https://openalex.org/W4322486185","https://openalex.org/W7214780873","https://openalex.org/W3035245446"],"abstract_inverted_index":null,"counts_by_year":[],"updated_date":"2026-10-16T09:59:22.235173","created_date":"2026-09-30T00:00:00"}
