{"id":9063,"date":"2023-08-29T10:33:37","date_gmt":"2023-08-29T10:33:37","guid":{"rendered":"https:\/\/jurmed.ro\/pacienti\/?p=9063"},"modified":"2023-08-29T10:33:37","modified_gmt":"2023-08-29T10:33:37","slug":"registrele-de-pacienti-o-necesitate-vitala-in-romania-pot-prinde-contur-incepand-cu-bolile-rare-unde-sunt-mai-putine-cazuri","status":"publish","type":"post","link":"https:\/\/jurmed.ro\/pacienti\/registrele-de-pacienti-o-necesitate-vitala-in-romania-pot-prinde-contur-incepand-cu-bolile-rare-unde-sunt-mai-putine-cazuri\/","title":{"rendered":"Registrele de pacienti \u2013 o necesitate vitala in Romania \u2013 pot prinde contur incepand cu bolile rare, unde sunt mai putine cazuri"},"content":{"rendered":"

Necesitatea registrelor de pacienti in Romaania este un subiect indelung discutat si niciodata pus in practica, dar specialistii sustin ca registrele ar putea prinde contur incepand cu bolile rare, unde sunt mai putine cazuri pe fiecare boal<\/strong>a.<\/strong><\/p>\n

In Romania, mai mult de 90% dintre pacientii cu boli rare sunt inca nediagnosticati si pemtru 95% dintre pacientii cu boli rare la nivel global nu exista niciun fel de tratament.<\/p>\n

\u201eIn lumina acestor cifre, devine esential sa dezvoltam modalitati eficiente de identificare si monitorizare a acestor afectiuni complexe. In prezent, sistemul ICD 10 acopera doar un numar restrans din cele 6-8000 de boli rare cunoscute. Avand in vedere ca jumatate din populatia tarii locuieste in medii rurale, dificultatea in diagnosticarea\u00a0 bolilor rare este mai mare. Chiar si atunci cand tratamentele devin disponibile, provocarile persista, deoarece lipsa unui registru national ne impiedica sa identificam si sa raspundem nevoilor pacientilor intr-un mod eficient. Aceasta initiativa nu doar ca ne-ar permite sa urmarim evolutia naturala a acestor afectiuni, dar si sa ne asiguram ca fiecare pacient primeste serviciile potrivite pentru nevoile sale specifice.\u201d spune Dorica Dan, presedinta ARC Rare.<\/p>\n

Importanta registrelor de pacienti a fost subiectului celui de-al treilea webinar din seria Share Experience 2023, organizat de Alianta Nationala pentru Boli Rare Romania si Asociatia Romana de Cancere Rare.<\/p>\n

Webinarul a atras atentia asupra importantei vitale a infiintarii registrelor pacientilor pentru a imbunatati rezultatele asistentei medicale, a stimula cercetarea si a promova o abordare colaborativa a ingrijirii pacientilor.<\/p>\n

Digitalizarea in sanatate trebuie sa fie prioritara, iar colectarea completa a datelor despre pacienti nu poate avea decat efecte benefice asupra luarii deciziilor informate de tratament, eficacitatii tratamentului si progresului cercetarii medicale. Mai mult decat atat, registrele ar permite conectivitate in timp real si schimb constant de informatii.<\/p>\n

Webinarul a fost moderat de Dorica Dan, presedinta\u00a0Aliantei Nationale pentru Boli Rare Romania. Invitati au fost dr. Daniel Ciurea, consultant OMS la Biroul regional Europa, dr. Ciprian Tomuleasa, Sectia de Hematologie, Institutul Oncologic \u201eProf. Dr. Ion Chiricuta\u201d Cluj-Napoca si Alina Patrahau, CEO si fondatoare a asociatiei \u201eDaruieste Aripi\u201d.<\/p>\n

Dr. Ciprian Tomuleasa a propus solutii privind posibilitatea utilizarii unui registru national eficient, sigur si modern, care sa permita monitorizarea tratamentului pacientilor hemofilici in conditii de siguranta crescuta, intrucat acestia sunt extrem de vulnerabili.<\/p>\n

\u201eRegistrele de pacienti sunt de importanta vitala in medicina moderna, in toate patologiile, nu doar in afectiunile rare sau hemato-oncologice. Registrele functionale ne permit aprecierea in timp real a numarului de pacienti diagnosticati si tratati. De asemenea, registrele permit o mai buna dezvoltare a politicilor de sanatate, cu implicatii medicale, dar si economice majore.”<\/em> spune dr. Ciprian Tomuleasa, Sectia de Hematologie, Institutul Oncologic \u201eProf. Dr. Ion Chiricuta\u201d Cluj-Napoca.<\/p>\n

In curand va fi lansata o noua aplicatie web AMC, dedicata asistentilor medicali comunitari si dezvoltata pentru a revolutiona modul in care se identifica si gestioneaza persoanele cu nevoi medico-sociale din comunitate. In parteneriat cu serviciul public de asistenta sociala, aceasta aplicatie inovatoare nu doar faciliteaza identificarea grupurilor vulnerabile, dar si echivaleaza cu eficacitate Registrul Pacientilor Vulnerabili. Pe langa asta, AMC vine cu o solutie de gestionare unitara, la nivel judetean si national, a rapoartelor de activitate ale asistentilor medicali comunitari. \u201eNoua aplicatie va fi centrata pe beneficiari, pe evaluarea vulnerabilitatilor si pe serviciile furnizate de asistentii medicali comunitari si va permite managementul de caz pentru fiecare beneficiar. De asemenea, va permite diagnoza comunitatilor vulnerabile.\u201d <\/em>spune dr. Daniel Ciurea, consultant OMS la Biroul Regional Europa.<\/p>\n

\u201eRegistrul National de Boli Rare este absolut necesar pentru a sti cati pacienti avem cu o anumita boala rara si cum sa dimensionam serviciile de care acestia au nevoie la un moment dat. Exista multe confuzii cu privire la ce sunt si ce nu sunt registrele de pacienti, dar depinde intotdeauna de scopul pentru care acestea au fost create.\u201d <\/em>spune Dorica Dan, presedinta ARC Rare.<\/p>\n

Vestile bune vin dinspre ong-uri. Asociatia \u201eDaruieste Aripi\u201d a lansat Registrul National al Cancerelor la Copil, un program de ingrijire acasa la copiii cu cancer si un proiect emblema, Dara, care functioneaza deja ca pilot si va fi lansat oficial anul acesta. \u201eDara gazduieste dosarele medicale onco-pediatrice, este gratuita pentru pacienti si reduce timpul, cheltuiala si consumul psihic al copiilor si parintilor.\u201d<\/em> explica presedinta asociatiei, Alina Patrahau.<\/p>\n

Webinarul \u201eRegistrele de pacienti\u201d este al treilea dintr-o serie de sase care se vor derula pana la finalul anului sub umbrela Share Experience 2023.<\/p>\n

Share Experience 2023<\/a><\/span> este un proiect organizat de Alianta Nationala pentru Boli Rare Romania<\/a><\/span> si Asociatia Romana de Cancere Rare<\/a><\/span> cu sprijinul Sanofi, Novartis, Bristol Myers Squibb, Janssen si UCB.<\/p>\n","protected":false},"excerpt":{"rendered":"

Necesitatea registrelor de pacienti in Romaania este un subiect indelung discutat si niciodata pus in practica, dar specialistii sustin ca registrele ar putea prinde contur incepand cu bolile rare, unde […]<\/p>\n","protected":false},"author":6,"featured_media":9064,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_exactmetrics_skip_tracking":false,"_exactmetrics_sitenote_active":false,"_exactmetrics_sitenote_note":"","_exactmetrics_sitenote_category":0,"footnotes":""},"categories":[1],"tags":[1215,783,1216,1172,1214],"class_list":["post-9063","post","type-post","status-publish","format-standard","has-post-thumbnail","category-stiri-noutati","tag-alianta-nationala-pentru-boli-rare","tag-arc-rare","tag-asociatia-daruieste-aripi","tag-asociatia-romana-de-cancere-rare","tag-registrele-de-pacienti"],"yoast_head":"\nRegistrele de pacienti \u2013 o necesitate vitala in Romania<\/title>\n<meta name=\"description\" content=\"Webinarul 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