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Until 2018, there was no unique diagnosis code for AS, thus true incidence, prevalence, mortality and morbidity rates are unknown. A social media effort was launched by caregivers of people with AS to gather community\u2010sourced data to understand AS mortality risks. Information on 220 deaths was verified with obituaries and public postings. Respiratory illness was the primary cause of death among people with AS overall, followed by accidents and seizures. Surprisingly, sudden unexpected death in sleep (SUDS) was the fourth most common cause, which has not been reported previously. Approximately 91% of people with AS have epilepsy, thus some SUDS cases may represent sudden unexpected deaths in epilepsy (SUDEP). Causes of death vary by age, and differ from the general population. Though there are obvious limitations to data collected through social media, grass roots science is a starting point to amass preliminary data and inform future epidemiological research on AS.<\/jats:p>","DOI":"10.1002\/ajmg.a.63961","type":"journal-article","created":{"date-parts":[[2024,12,16]],"date-time":"2024-12-16T06:58:35Z","timestamp":1734332315000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":3,"title":["Community\u2010Sourced Reporting of Mortalities in Angelman Syndrome (1979\u20132022)"],"prefix":"10.1002","volume":"197","author":[{"ORCID":"https:\/\/orcid.org\/0009-0000-3598-460X","authenticated-orcid":false,"given":"Adriana T.","family":"Gomes","sequence":"first","affiliation":[{"name":"UCSD  San Diego California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0007-6499-8593","authenticated-orcid":false,"given":"Amanda","family":"Moore","sequence":"additional","affiliation":[{"name":"Angelman Syndrome Foundation  Aurora Illinois USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1281-498X","authenticated-orcid":false,"given":"Meagan","family":"Cross","sequence":"additional","affiliation":[{"name":"FAST Australia  Salisbury Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0006-1958-663X","authenticated-orcid":false,"given":"Cristy","family":"Hardesty","sequence":"additional","affiliation":[{"name":"Patient Advocate  New Market Alabama USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0001-9057-6198","authenticated-orcid":false,"given":"Kelly","family":"David","sequence":"additional","affiliation":[{"name":"Foundation for Angelman Syndrome Therapeutics (FAST)  Austin Texas USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maria Galan","family":"Sampedro","sequence":"additional","affiliation":[{"name":"FAST Spain  Almer\u00eda Almer\u00eda Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0006-6435-6673","authenticated-orcid":false,"given":"Sophie","family":"Dube","sequence":"additional","affiliation":[{"name":"Angelman Quebec Foundation  Pierrefonds Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0000-2217-5328","authenticated-orcid":false,"given":"Sharon","family":"Weil\u2010Chalker","sequence":"additional","affiliation":[{"name":"Perinatal Cardiology Consultants  Havertown Pennsylvania USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Adela Gentil","family":"Montepagano","sequence":"additional","affiliation":[{"name":"Cl\u00ednica Angelman de Buenos Aires  San Isidro Buenos Aires Argentina"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0009-4429-0189","authenticated-orcid":false,"given":"Ursula","family":"Christel","sequence":"additional","affiliation":[{"name":"The Angelman Network  Warkworth New Zealand"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0003-6747-6118","authenticated-orcid":false,"given":"Rachel","family":"Martin","sequence":"additional","affiliation":[{"name":"AngelmanUK  Nuneaton UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2693-5616","authenticated-orcid":false,"given":"Anne","family":"Wheeler","sequence":"additional","affiliation":[{"name":"RTI International  Raleigh North Carolina USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1593-6149","authenticated-orcid":false,"given":"Wen\u2010Hann","family":"Tan","sequence":"additional","affiliation":[{"name":"Boston Children's Hospital  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4833-3747","authenticated-orcid":false,"given":"Lynne M.","family":"Bird","sequence":"additional","affiliation":[{"name":"UCSD, Rady Children's Hospital San Diego  San Diego California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1055-4993","authenticated-orcid":false,"given":"Terry Jo","family":"Bichell","sequence":"additional","affiliation":[{"name":"COMBINEDBrain  Brentwood Tennessee USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2024,12,16]]},"reference":[{"key":"e_1_2_11_2_1","doi-asserted-by":"publisher","DOI":"10.15585\/mmwr.mm7117e1"},{"key":"e_1_2_11_3_1","doi-asserted-by":"publisher","DOI":"10.2196\/jmir.3050"},{"key":"e_1_2_11_4_1","doi-asserted-by":"publisher","DOI":"10.1080\/15265161.2019.1602176"},{"key":"e_1_2_11_5_1","unstructured":"Bichell T. 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