Public Health

BACKGROUND: Members of the LGBTQIA+ community endure many forms of stigma and discrimination and in research, they are frequently 'non-identified'. A contributing factor is the historic lack of categorization for non-binary (male/female) gender identity. This is particularly so for the Trans community who are already marginalized both in society and medical care. The consequence is that the LGBTQIA+ community are thereby excluded by default from important neurodegenerative disease and mental health research because the lack of non-binary categorization means that members do not/cannot/do not wish to identify with the gender categories provided and are forced to select 'other', 'non-specified' or 'do not wish to answer'. The subsequent result of this in research means that members of the community may be simply recoded as a 'missing number', resulting in the exclusion of their data from important findings, treatments or solutions for neurodegenerative and mental health diseases. The overall objective of 'Not Just a Missing Number' (N-Jam) is to address key overlooked outcomes of lack of appropriate categorisation provided for the LGBTQIA+ communities. Importantly, the project will focus on exposures and outcomes relevant to the LGBTQIA+ communities, e.g., social isolation, marginalisation, discrimination, gender specific health misidentification for the Trans community. METHOD: Establish personal and public involvement (PPI) and steering groups from within and among the LGBTQIA+ communities Highlight the current situation and consequences of inadequate LGBTQIA+ categorisation on neurodegenerative disease (Alzheimer's Disease (AD), Parkinson's Disease (PD), dementias) and mental health (e.g., depression, anxiety, stress, personality disorders) outcomes. Establish a longitudinal cohort for the investigation of neurodegenerative diseases and mental health specifically for the LGBTQIA+ communities, designed by the communities, named by the communities and run by the communities. RESULT: The outcomes of this programme of work will be exponential, providing the first longitudinal cohort study of neurodegeneration and mental health which is inclusive to all LGBTQIA+ communities. CONCLUSION: The main, and important impact of this longitudinal study will be that for the first time, the LGBTQIA+ will be included in analyses which explore exposures and outcomes of neurodegeneration and mental health specific to these communities (e.g., marginalisation).