Assessment of long-term psychosocial outcomes in N-methyl-D-aspartate receptor encephalitis – the SAPIENCE study protocol
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.
Authors
- Marie Bénaiteau (ORCID: https://orcid.org/0009-0005-2347-6006)
- Marta Duda-Sikuła
- Donata Kurpas (ORCID: https://orcid.org/0000-0002-6996-8920)
- Víctor Patricio
- Géraldine Picard (ORCID: https://orcid.org/0000-0003-1282-267X)
- A. Fuchsia Howard (ORCID: https://orcid.org/0000-0001-5704-1733)
- Ole Jonas Boeken (ORCID: https://orcid.org/0000-0002-1727-3625)
- Ava Easton (ORCID: https://orcid.org/0000-0002-1739-2915)
- Josep Dalmau (ORCID: https://orcid.org/0000-0001-5856-2813)
- Jérôme Honnorat (ORCID: https://orcid.org/0000-0002-4721-5952)
- J. Heine (ORCID: https://orcid.org/0000-0001-5226-6650)
- Álvaro Mendes (ORCID: https://orcid.org/0000-0002-8766-7646)
- Carsten Finke (ORCID: https://orcid.org/0000-0002-7665-1171)
- Chloé Buttard
Institutions
- Université Claude Bernard Lyon 1 (FR)
- Centre National de la Recherche Scientifique (FR)
- University of Liverpool (GB)
- Inserm (FR)
- Wroclaw Medical University (PL)
- Institut NeuroMyoGène (FR)
- Encephalitis Society (GB)
- Fundació Clínic per a la Recerca Biomèdica (ES)
- i3S - Instituto de Investigação e Inovação em Saúde, Universidade do Porto (PT)
- Charité - Universitätsmedizin Berlin (DE)
Publication Details
- Journal
- BMC Neurology
- Published
- 2024-09-06
- DOI
- https://doi.org/10.1186/s12883-024-03842-6
- Citations
- 1
- Primary Topic
- Autoimmune Neurological Disorders and Treatments
- Type
- article
- Field-Weighted Citation Impact
- 0.37
Funders
- European Commission
- Deutsche Forschungsgemeinschaft
- Agence Nationale de la Recherche
- Bundesministerium für Bildung und Forschung
- Charité – Universitätsmedizin Berlin
- Instituto de Salud Carlos III