{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,8]],"date-time":"2026-10-08T19:41:50Z","timestamp":1791488510195,"version":"4.3.4"},"reference-count":16,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2021,11,25]],"date-time":"2021-11-25T00:00:00Z","timestamp":1637798400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["American J of Med Genetics Pt C"],"published-print":{"date-parts":[[2021,12]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>The Ehlers\u2010Danlos Society Extension for Community Health Care Outcomes (EDS ECHO) is a portfolio of teleconferencing programs developed around the principles and practices of Project ECHO\u00ae, aimed at increasing awareness of Ehlers\u2010Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) among clinicians, enhancing their confidence in the assessment and management of these complex conditions, and generating networks of clinicians across specialties. We assessed the outcomes of the first EDS ECHO program, launched in April 2019, with two hub locations: Indiana University Health, Indianapolis, Indiana, USA, and The Royal Society of Medicine, London, UK. Clinicians were surveyed before and 6\u2009months after their participation. We describe the initial outcomes of the first four EDS ECHO programs, each comprising nine sessions. Participants reported increased levels of knowledge and confidence in providing care (93% and 95%, respectively) and an increase in referral network participation (65%). Additionally, 80% reported that their interest in EDS and HSD increased; 57% reporting a great increase. Also, 59% reported a decrease in feeling overwhelmed by EDS and HSD, and nearly half reported a decrease in their level of frustration because of participating in EDS ECHO. Clinicians participating in EDS ECHO programs know more, have more confidence in their ability to provide care, and feel energized by their participation.<\/jats:p>","DOI":"10.1002\/ajmg.c.31960","type":"journal-article","created":{"date-parts":[[2021,11,25]],"date-time":"2021-11-25T16:42:58Z","timestamp":1637858578000},"page":"609-615","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":20,"title":["Initial description and evaluation of EDS ECHO: An international effort to improve care for people with the Ehlers\u2010Danlos syndromes and hypermobility spectrum disorders"],"prefix":"10.1002","volume":"187","author":[{"given":"Jane R.","family":"Schubart","sequence":"first","affiliation":[{"name":"Department of Surgery, Division of Outcomes Research The Pennsylvania State University College of Medicine  Hershey Pennsylvania USA"},{"name":"Department of Public Health Sciences The Pennsylvania State University College of Medicine  Hershey Pennsylvania USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rebecca","family":"Bascom","sequence":"additional","affiliation":[{"name":"Department of Public Health Sciences The Pennsylvania State University College of Medicine  Hershey Pennsylvania USA"},{"name":"Department of Medicine, Division of Pulmonary, Allergy and Critical Care The Pennsylvania State University College of Medicine  Hershey Pennsylvania USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4032-7425","authenticated-orcid":false,"given":"Clair A.","family":"Francomano","sequence":"additional","affiliation":[{"name":"Department of Medical and Molecular Genetics Indiana University School of Medicine  Indianapolis Indiana USA"},{"name":"The Ehlers\u2010Danlos Society  New York USA and London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6168-8094","authenticated-orcid":false,"given":"Lara","family":"Bloom","sequence":"additional","affiliation":[{"name":"The Ehlers\u2010Danlos Society  New York USA and London UK"},{"name":"Department of Medicine The Pennsylvania State University College of Medicine  Hershey Pennsylvania USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7170-1697","authenticated-orcid":false,"given":"Alan J.","family":"Hakim","sequence":"additional","affiliation":[{"name":"The Ehlers\u2010Danlos Society  New York USA and London UK"},{"name":"Department of Medicine The Pennsylvania State University College of Medicine  Hershey Pennsylvania USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2021,11,25]]},"reference":[{"key":"e_1_2_8_2_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMoa1009370"},{"key":"e_1_2_8_3_1","volume-title":"Taxonomy of educational objectives, handbook I: the cognitive domain","author":"Bloom B. 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Retrieved fromhttps:\/\/www.healthwatchcalderdale.co.uk\/report\/hypermobility-syndromes\/"},{"key":"e_1_2_8_12_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.c.31552"},{"key":"e_1_2_8_13_1","doi-asserted-by":"publisher","DOI":"10.1177\/2382120519840332"},{"key":"e_1_2_8_14_1","unstructured":"Project ECHO(2021).University of New Mexico School of Medicine. About ECHO. Retrieved fromhttps:\/\/echo.unm.edu\/about-echo\/"},{"key":"e_1_2_8_15_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJM200003093421009"},{"key":"e_1_2_8_16_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.c.31538"},{"key":"e_1_2_8_17_1","doi-asserted-by":"publisher","DOI":"10.1097\/ACM.0000000000001328"}],"container-title":["American Journal of Medical Genetics Part C: Seminars in Medical Genetics"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/ajmg.c.31960","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1002\/ajmg.c.31960","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/ajmg.c.31960","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,8,28]],"date-time":"2023-08-28T05:57:59Z","timestamp":1693202279000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/ajmg.c.31960"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021,11,25]]},"references-count":16,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2021,12]]}},"alternative-id":["10.1002\/ajmg.c.31960"],"URL":"https:\/\/doi.org\/10.1002\/ajmg.c.31960","archive":["Portico"],"relation":{},"ISSN":["1552-4868","1552-4876"],"issn-type":[{"value":"1552-4868","type":"print"},{"value":"1552-4876","type":"electronic"}],"subject":[],"published":{"date-parts":[[2021,11,25]]},"assertion":[{"value":"2021-11-15","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2021-11-15","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2021-11-25","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}