{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,6,4]],"date-time":"2025-06-04T16:34:31Z","timestamp":1749054871273},"reference-count":12,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2022,10,1]],"date-time":"2022-10-01T00:00:00Z","timestamp":1664582400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2022,10,1]],"date-time":"2022-10-01T00:00:00Z","timestamp":1664582400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"name":"Institute of Applied Biosciences, Centre for Research & Technology Hellas, Thermi, Greece"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["BMC Med Inform Decis Mak"],"abstract":"<jats:title>Abstract<\/jats:title><jats:sec>\n                <jats:title>Background<\/jats:title>\n                <jats:p>Chronic respiratory conditions are a prominent public health issue and thus, building a patient registry might facilitate both policy decision making and improvement of clinical management processes. Hellenic Registry of patients with Home Mechanical Ventilation (HR-HMV) was initiated in 2017 and a web-based platform is used to support patient data collection. Eighteen hospital departments (including sleep labs) across Greece participate in this initiative, focusing on recording data for both children and adult patients supported by mechanical ventilation at home, including patients with Sleep Apnea\u2013Hypopnea Syndrome (SAHS) under Positive Airway Pressure (PAP) therapy.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>The HR-HMV initiative ultimately aims to provide a database for evidence-based care and policy making in this specific domain. To this end, a web information system was developed and data were manually collected by clinics and hospital departments. Legal and privacy issues (such as General Data Protection Rule compliance and technical information security measures) have been considered while designing the web application. Based on the collected data, an exploratory statistical report of SAHS patients in Greece is presented.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>Eleven out of the eighteen participating clinics and hospital departments have contributed with data by the time of the current study. More than 5000 adult and children patient records have been collected so far, the vast majority of which (i.e., 4900 patients) diagnosed with SAHS.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusion<\/jats:title>\n                <jats:p>The development and maintenance of patient registries is a valuable tool for policy decision making, observational\/epidemiological research and beyond (e.g., health technology assessment procedures). However, as all data collection and processing approaches, registries are also related with potential biases. Along these lines, strengths and limitations must be considered when interpreting the collected data, and continuous validation of the collected clinical data per se should be emphasized. Especially for Greece, where the lack of national registries is eminent, we argue that HR-HMV could be a useful tool for the development and the update of related policies regarding the healthcare services for patients with home mechanical ventilation support and SAHS patients, which could be useful for related initiatives at a European level as well.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1186\/s12911-022-01989-1","type":"journal-article","created":{"date-parts":[[2022,10,1]],"date-time":"2022-10-01T07:02:44Z","timestamp":1664607764000},"update-policy":"http:\/\/dx.doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":3,"title":["Hellenic registry of patients with home mechanical ventilation (HR-HMV): profiling sleep Apnea\u2013Hypopnea syndrome patients across Greece"],"prefix":"10.1186","volume":"22","author":[{"given":"Vlasios K.","family":"Dimitriadis","sequence":"first","affiliation":[]},{"given":"Christina","family":"Alexopoulou","sequence":"additional","affiliation":[]},{"given":"Anastasia","family":"Amfilochiou","sequence":"additional","affiliation":[]},{"given":"Paschalis","family":"Steiropoulos","sequence":"additional","affiliation":[]},{"given":"Georgia","family":"Trakada","sequence":"additional","affiliation":[]},{"given":"Dimitra","family":"Siopi","sequence":"additional","affiliation":[]},{"given":"Athanasia","family":"Pataka","sequence":"additional","affiliation":[]},{"given":"Elpis","family":"Hatziagorou","sequence":"additional","affiliation":[]},{"given":"Athanasios","family":"Konstandinidis","sequence":"additional","affiliation":[]},{"name":"HR-HMV Data Curation Group","sequence":"additional","affiliation":[]},{"given":"Georgia","family":"Varsou","sequence":"additional","affiliation":[]},{"given":"Anastasia","family":"Chasiotou","sequence":"additional","affiliation":[]},{"given":"Anastasios","family":"Kallianos","sequence":"additional","affiliation":[]},{"given":"Athanasios","family":"Gounidis","sequence":"additional","affiliation":[]},{"given":"Eumorfia","family":"Kondili","sequence":"additional","affiliation":[]},{"given":"Charikleia","family":"Tselepi","sequence":"additional","affiliation":[]},{"given":"Georgia","family":"Chasapidou","sequence":"additional","affiliation":[]},{"given":"Athanasios","family":"Voulgaris","sequence":"additional","affiliation":[]},{"given":"Kalamaras","family":"George","sequence":"additional","affiliation":[]},{"given":"Elissavet-Anna","family":"Chrysochou","sequence":"additional","affiliation":[]},{"given":"Michalis","family":"Agrafiotis","sequence":"additional","affiliation":[]},{"given":"Maria","family":"Antoniadou","sequence":"additional","affiliation":[]},{"given":"Porpodis","family":"Konstantinos","sequence":"additional","affiliation":[]},{"given":"John","family":"Tsanakas","sequence":"additional","affiliation":[]},{"given":"Venetia","family":"Tsara","sequence":"additional","affiliation":[]},{"given":"Pantelis","family":"Natsiavas","sequence":"additional","affiliation":[]}],"member":"297","published-online":{"date-parts":[[2022,10,1]]},"reference":[{"key":"1989_CR1","volume-title":"Disease Registers in England. 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Ethical approval was taken by the \u201cCentre for Research and Technology Hellas Ethics Committee\u201d (decision number ETH.COM-73). All data were anonymised and informed consent was obtained from all subjects and\/or their legal guardian(s) and furthermore, administrative permissions were also provided by the respective hospitals in written form (a \u201cMemorandum of Understanding\u201d was signed between INAB|CERTH and each data provider was signed).","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Not applicable.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"The authors declare that they have no competing interests.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"257"}}