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Despite good functional neurological recovery, most patients continue to experience cognitive, psychiatric, psychological, and social impairments years after the acute phase. However, the precise nature and evolving patterns over time of these long-term consequences remain unclear, and their implications for the well-being and quality of life of predominantly young patients have yet to be thoroughly examined.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>SAPIENCE is a European multi-center (<jats:italic>n<\/jats:italic>\u2009=\u20093) prospective observational cohort study studying the long-term cognitive, psychiatric, psychological, and social outcome in patients with NMDAR encephalitis. The study consists of three interconnected levels. Level 1 comprises a qualitative interview and focus groups with patients and their caregivers. Level 2 consists of a condensed form of the interview, standardized questionnaires, and a detailed neuropsychological examination of patients. Level 3 involves an online survey that will be open to patients world-wide and explores patient-reported outcomes (PROMs), and patient-reported experiences (PREMs) in association with clinical and cognitive outcomes. Levels 1 to 3 will progressively contribute developing of structured interviews, survey questions, and treatment guidelines by informing one another.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Discussion<\/jats:title>\n                <jats:p>SAPIENCE is an in-depth study of the long-term effects of NMDAR encephalitis and bridges the gap between standardized assessments and individual patient experiences, intending to improve patient care and to increase awareness of the psychosocial long-term consequences of the disease. Through collaboration of experts in clinical neurology and social and health psychology across Europe, SAPIENCE aims to create online assessment tools and formulate guidelines for patient-centered post-acute care that will help enhance the quality of life for patients and caregivers.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1186\/s12883-024-03842-6","type":"journal-article","created":{"date-parts":[[2024,9,6]],"date-time":"2024-09-06T08:05:48Z","timestamp":1725609948000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Assessment of long-term psychosocial outcomes in N-methyl-D-aspartate receptor encephalitis \u2013 the SAPIENCE study protocol"],"prefix":"10.1186","volume":"24","author":[{"given":"Ole Jonas","family":"Boeken","sequence":"first","affiliation":[]},{"given":"Josephine","family":"Heine","sequence":"additional","affiliation":[]},{"given":"Marta","family":"Duda-Sikula","sequence":"additional","affiliation":[]},{"given":"V\u00edctor","family":"Patricio","sequence":"additional","affiliation":[]},{"given":"G\u00e9raldine","family":"Picard","sequence":"additional","affiliation":[]},{"given":"Chlo\u00e9","family":"Buttard","sequence":"additional","affiliation":[]},{"given":"Marie","family":"Benaiteau","sequence":"additional","affiliation":[]},{"given":"\u00c1lvaro","family":"Mendes","sequence":"additional","affiliation":[]},{"given":"Fuchsia","family":"Howard","sequence":"additional","affiliation":[]},{"given":"Ava","family":"Easton","sequence":"additional","affiliation":[]},{"given":"Donata","family":"Kurpas","sequence":"additional","affiliation":[]},{"given":"J\u00e9r\u00f4me","family":"Honnorat","sequence":"additional","affiliation":[]},{"given":"Josep","family":"Dalmau","sequence":"additional","affiliation":[]},{"given":"Carsten","family":"Finke","sequence":"additional","affiliation":[]}],"member":"297","published-online":{"date-parts":[[2024,9,6]]},"reference":[{"key":"3842_CR1","doi-asserted-by":"publisher","first-page":"1045","DOI":"10.1016\/S1474-4422(19)30244-3","volume":"18","author":"J Dalmau","year":"2019","unstructured":"Dalmau J, Armangu\u00e9 T, Planagum\u00e0 J, Radosevic M, Mannara F, Leypoldt F, et al. 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The study has received conditional ethics clearance from EJP RD JTC2021 for all Levels, contingent on the development of global procedures for informed consent in the online study (Level 3). The SAPIENCE project has successfully undergone independent peer-review and was selected for funding in the EJP RD JTC2021 call.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Levels 1 and 2 of SAPIENCE have been granted ethical approval at all study sites (Ethikkommission der Charit\u00e9 \u2013 Universit\u00e4tsmedizin Berlin (EA2\/138\/23, 13.07.2023); Comit\u00e9 \u00c9tico de Investigaci\u00f3n Cl\u00ednica del Hospital Cl\u00ednic de Barcelona; Comit\u00e9 de Protection des Personnes EST III (2023-A01446-39; NCT05954468)).","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Approvals for Level 3 are currently underway in Berlin and Lyon, with ethical approval already granted for the Spanish site.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"The study is being conducted under the Declaration of Helsinki and Good Clinical Practice guidelines, which include the protection of data and patient privacy. All participants are required to provide written informed consent before participating.","order":5,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Informed consent is obtained from participants at each study site prior to recruitment, and the inability to provide informed consent is regarded as an exclusion criterion. Consent must adhere to data protection laws, such as GDPR, and encompass a mandatory subsection specifically addressing consent for publication.","order":6,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"The authors declare no competing interests.","order":7,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"322"}}