Gender Incongruence in Norway
Long-term Outcomes and health service use among young people with gender incongruence in Norway A national register-based research project at the Center for Population Health.
About the Project
The Centre for Population Health leads a national register-based research project on young people with gender incongruence in Norway.
The project is funded by Helse Vest RHF and has received approval from the Regional Committee for Medical and Health Research Ethics (REK 167265).
Referrals related to gender incongruence have increased substantially over the past decade, particularly among young people registered as girls at birth. At the same time, international evidence reviews have identified significant gaps in the knowledge base for medical treatment of minors. Over the same period, Norwegian health services have undergone major changes, including the national clinical guideline issued by the Norwegian Directorate of Health in 2020 and the establishment of regional centres for gender incongruence (RSKi) from 2022. The project uses unique Norwegian registry data to describe clinical trajectories, health service use, and long-term outcomes during a period marked by professional and political debate.
Data Sources and Sub-projects
The project draws on linked registry data from the Norwegian Patient Registry, the Prescription Registry, Statistics Norway, the Medical Birth Registry, and the Cause of Death Registry. Data linkage has been established at the Norwegian Institute of Public Health. The project follows individuals with registered diagnoses related to gender incongruence and compares them with matched population controls and, where possible, siblings without such a diagnosis. The work is organised into five sub-projects covering trends in diagnoses and treatment, mental health and neurodevelopmental diagnoses prior to specialist contact, long-term trajectories in health, education, employment and welfare, variation in service organisation and policy, and waiting times and trajectories during the waiting period.
Clinical and Service User Involvement
Clinical and Service User involvement are integrated into all phases of the project and organised according to the Lived, Loved, Laboured and Learned framework described by Killackey (Lancet Psychiatry, 2023). The framework distinguishes between four forms of relevant experience: lived experience – people with personal experience of the condition; loved experience – those close to them, such as partners, family members, and others in their personal network; laboured experience – clinicians and others who work with this patient group; and learned experience – researchers and specialists with academic or methodological expertise in the field.
Participate as an Experience Consultant
We emphasise breadth of experience and invite people who have personal experience of gender incongruence – both with and without clinical treatment, both those who are satisfied and those who are dissatisfied with the health services they have received, and people who no longer identify as trans – as well as their close ones. It is possible to participate as an experience consultant as an individual, without affiliation to a user or interest organisation. Experience consultants receive an hourly rate, and anonymous participation is possible for those who prefer it. Those interested can contact the project leader at arnstein.mykletun@helse-bergen.no for more information about the arrangement and how to contribute.
A clinical advisory panel with representatives from the RSKi centres provides insight into service organisation, referral practices, and treatment pathways. The collaboration is grounded in shared terms of engagement designed to ensure constructive dialogue, diversity of opinion, and the research group's professional independence in a contested field.
Organisation and Collaboration
The project is led by Professor Arnstein Mykletun. It is carried out in collaboration with the regional centres for gender incongruence, the Norwegian Institute of Public Health, and King's College London. Results will be published in open-access peer-reviewed journals and communicated to health services, decision-makers, and the general public. The first results are expected from 2027, and this page will be updated on an ongoing basis.