RESILIENCE (Retrospective Linkage Study of Autoimmune Encephalitis): protocol for an Australian retrospective cohort study of outcomes in autoimmune encephalitis using data linkage techniques

Amy Jean Halliday; Katrina Lambert; Christine Bundell; Andrew McLean-Tooke; David Gillis; Kerri M Prain; Greg Bryson; Lisa Gillinder; David Brown; Sudarshini Ramanathan; Russell Dale; Fabienne Brilot; Nerissa Jordan; Nicholas Lawn; Alan Lai; James Boyd; Australian Adult Comprehensive Epilepsy Centres Consortium; Ximena Camacho; Wendyl Jude D'Souza

doi:10.1136/bmjopen-2024-084664

RESILIENCE (Retrospective Linkage Study of Autoimmune Encephalitis): protocol for an Australian retrospective cohort study of outcomes in autoimmune encephalitis using data linkage techniques

BMJ Open. 2024 Dec 5;14(12):e084664. doi: 10.1136/bmjopen-2024-084664.

Authors

Amy Jean Halliday^{1

2}, Katrina Lambert³, Christine Bundell⁴, Andrew McLean-Tooke^{4

5}, David Gillis⁶, Kerri M Prain⁶, Greg Bryson⁶, Lisa Gillinder^{7

8}, David Brown⁹, Sudarshini Ramanathan^{10

11

12

13}, Russell Dale^{11

14

15}, Fabienne Brilot^{11

14

16}, Nerissa Jordan¹⁷, Nicholas Lawn^{18

19}, Alan Lai², James Boyd³; Australian Adult Comprehensive Epilepsy Centres Consortium; Ximena Camacho²⁰, Wendyl Jude D'Souza^{21

2}

Collaborators

Australian Adult Comprehensive Epilepsy Centres Consortium:
Mark Cook, John Dunne, Lisa Gillinder, Udaya Seneviratne, Emma Whitham, Nicholas Lawn, Elaine Pang, Mastura Monif, Saxon Douglass, Ernest Butler, Wendyl D'Souza

Affiliations

¹ Department of Clinical Neurosciences, St Vincent's Hospital Melbourne, Fitzroy, Victoria, Australia [email protected].
² Department of Medicine, St Vincent's Hospital Melbourne, The University of Melbourne, Fitzroy, Victoria, Australia.
³ Department of Public Health, School of Psychology and Public Health, La Trobe University, Melbourne, Victoria, Australia.
⁴ Department of Laboratory Immunology, Clinical Immunology, PathWest, Nedlands, Western Australia, Australia.
⁵ Department of Clinical Immunology, Sir Charles Gairdner Hospital, Nedlands, Western Australia, Australia.
⁶ Autoimmune-Immunobiology Laboratory, Division of Immunology, Queensland Public Health and Scientific Services, Queensland Health, Herston, Queensland, Australia.
⁷ Queensland Brain Institute, The University of Queensland, St Lucia, Queensland, Australia.
⁸ Neurology Department, Princess Alexandra Hospital, Brisbane, Queensland, Australia.
⁹ Centre for Allergy and Immunology Research, Institute of Clinical Pathology and Medical Research, Westmead, New South Wales, Australia.
¹⁰ Translational Neuroimmunology Group, Kids Neuroscience Centre, Kids Research at the Children's Hospital at Westmead, Westmead, New South Wales, Australia.
¹¹ Brain and Mind Centre, The University of Sydney, Sydney, New South Wales, Australia.
¹² Department of Neurology, Concord Hospital, Sydney, New South Wales, Australia.
¹³ Sydney Medical School, Faculty of Medicine and Health, University of Sydney, Sydney, New South Wales, Australia.
¹⁴ Brain Autoimmunity Group, Kids Neuroscience Centre, Kids Research at the Children's Hospital at Westmead, Sydney, New South Wales, Australia.
¹⁵ Specialty of Child and Adolescent Health, Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia.
¹⁶ School of Medical Sciences, Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia.
¹⁷ Department of Neurology, Fiona Stanley Hospital, Murdoch, Western Australia, Australia.
¹⁸ Western Australian Adult Epilepsy Service, Sir Charles Gairdner Hospital, Nedlands, Western Australia, Australia.
¹⁹ School of Medicine, Royal Perth Hospital Unit, The University of Western Australia, Perth, Western Australia, Australia.
²⁰ School of Population and Global Health, The University of Melbourne, Melbourne, Victoria, Australia.
²¹ Department of Clinical Neurosciences, St Vincent's Hospital Melbourne, Fitzroy, Victoria, Australia.

Abstract

Introduction: The autoimmune encephalitides (AE) are a heterogeneous group of neurological disorders with significant morbidity and healthcare costs. Despite advancements in understanding their pathophysiology, uncertainties persist regarding long-term prognosis and optimal management. This study aims to address these gaps, focusing on immunotherapeutic strategies, neoplastic associations and functional outcomes.

Methods and analysis: The Retrospective Linkage Study of Autoimmune Encephalitis project will use data linkage techniques to establish a retrospective 10-year population cohort of Australian patients with AE. Two cohorts will be analysed, the Reference Cohort (clinically confirmed AE cases obtained from hospital medical records, n=145) and the Operationally Defined Cohort (AE cases identified through administrative coding data, n≈5000). Univariate statistical methods will identify candidate coding elements for use in the operational case definition and multivariate models and evaluation methods used to identify and internally validate the optimal coding algorithms. The two study cohorts will be analysed separately due to the high likelihood of overlap. Primary outcomes include relapse rate, prevalence and control of epilepsy, cognitive disability, poor educational attainment, delayed tumour diagnosis and mortality. Statistical analyses, including random mixed-effects regression models, will assess treatment effects, covariates and outcomes.

Ethics and dissemination: This project has been approved by the leading investigators' institutional Human Research Ethics Committee (HREC), the St Vincent's Hospital Melbourne HREC, as well as the Australian Institute of Health and Welfare HREC and relevant jurisdictional HRECs where required. The dissemination of findings through peer-reviewed publications and patient advocacy channels will maximise the impact of this research.

Keywords: EPIDEMIOLOGY; IMMUNOLOGY; Neurology.

MeSH terms

Adult
Australia
Encephalitis* / therapy
Epilepsy
Female
Hashimoto Disease
Humans
Information Storage and Retrieval
Male
Research Design
Retrospective Studies

Supplementary concepts

Hashimoto's encephalitis