This national oversight board has been established to ensure research is embedded at the heart of new children and young people’s gender dysphoria services as they are shaped and developed.

The board provides leadership and oversight of a supporting research programme established jointly by NHS England and the National Institute for Health and Care Research (NIHR) to underpin the redesign and ongoing development of services for children and young people (CYP) with gender incongruence. The programme recognises that there are currently material gaps in the evidence base for different support and treatment approaches, and that our understanding and knowledge of the experience and ‘natural history’ of gender incongruence in current generations of children is still growing. We are committed to working collaboratively with stakeholders to inform the ongoing development of evidence-based care. As such, the programme will continue to grow and develop in partnership with children and their families, clinicians and other professionals, and currently includes:

• investment in research capacity – providing funding to enable NHS clinicians to build academic expertise and dedicate time to research and ongoing service evaluation alongside their clinical work  directly supporting patients
• living systematic evidence reviews – maintaining an up-to-date evidence synthesis of the latest international research, to inform national policy and front-line clinical practice (NIHR commissioned)
• a priority setting partnership – independently led by the James Lind Alliance, providing the opportunity for children and young people (up to the age of 25), their parents, health, social care and education professionals across the UK to inform the direction of future research, designed to respond to their needs
• a puberty supressing hormone clinical trial – a wider study which includes a clinical trial to help build a better understanding of the potential benefits or harms of ‘puberty blocking’ treatments in the management of gender incongruence or dysphoria
• learning through information – collecting comprehensive and consistent clinical information across all CYP gender services, paired with a clear and open data consent process for children and their families. This will enable anonymised data to be used to better understand the needs of children referred into NHS services, their experience and outcomes
• a data linkage study – as well as proactively engaging with children, young people and families currently accessing gender services, this separate observational data analysis will help us to also learn from the experience and outcomes of young adults who accessed previous models of NHS care

The ‘PATHWAYS’ study, which includes a large scale observational study as well as a randomised controlled clinical trial into the potential benefits and harms of puberty suppressing hormones for children and young people with gender incongruence, specifically when provided alongside the new model of NHS specialist care, has been developed through the National Research Collaboration Programme (NCRP) in place between NHS England and the National Institute for Health and Care Research (NIHR). Studies progressed through this route have to demonstrate that they can materially build the evidence base for potential future NHS treatment options, while meeting a high scientific bar in terms of research methodology and peer review, as well as securing other important research approvals, including ethics committee approval.

Children and young people in England and Wales (and potentially across the UK) will be able to participate in the study with access through NHS children and young people’s gender services. A multi-disciplinary team approach will be taken to identify those children who, with the consent of their parents, may be deemed clinically suitable for consideration of puberty suppressing hormones through the study. Children participating in the study will continue to receive ongoing assessment and comprehensive psychosocial support under the new routine NHS service.

The study will measure a range of potential treatment benefits and harms (for example whether puberty suppressing hormones impact in a meaningful way on levels of anxiety or depression, on body image, or brain development) using a range of validated tools, questionnaires and user feedback.  Key measures included in the study, and the way data are collected, will aim to bridge gaps in existing research and will also be shaped by ongoing engagement with a range of stakeholders, including children and young people referred into NHS gender services and their families or carers.

Membership of the Research Oversight Board

• Chair – Professor Sir Simon Wessely (Non-Executive Director, NHS England)
• Beth Scott, Deputy Director (Research Programmes), Department of Health and Social Care (DHSC)
• Baroness Dr Hilary Cass, Independent Advisor on Gender, DHSC
• (TBC), Medical Research Council (MRC)
• Professor Steve Turner, President of the Royal College of Paediatrics and Child Health (RCPCH)
• Dr Camilla Kingdon, Chair of the Children and Young People’s Gender Services Provider Collaborative
• Professor Peter Fonagy, National Clinical Advisor, Children’s Mental Health, NHS England
• Professor Indi Banerjee and Dr Rachel Elvins; Royal Manchester Children’s Hospital
• Dr Lindsay Neil, Alder Hey Children’s NHS Foundation Trust
• Dr Troy Tranah, South London and Maudsley NHS Foundation Trust
• Dr Julie Alderson, University Hospitals Bristol NHS Foundation Trust 
• Stephen Tomlin, Consultant Pharmacist at Great Ormond Street Hospital
• Dr Amy Dissanayake, Deputy Chief Medical Officer (Sussex) and NHS England National Specialty Advisor for Autism
• Professor John Chester, Director of Research and Innovation, Alder Hey Children’s NHS Foundation Trust
• Professor Thomas Voit, Director of the NIHR Great Ormond Street Hospital for Children NHS Foundation Trust (GOSH) Biomedical Research Centre and Professor of Paediatrics at GOSH
• Professor Grainne McAlonan, Professor of Translational Neuroscience and Interim Director, NIHR-Maudsley Biomedical Research Centre (BRC)
• Professor Stuart Logan, Director of South West Peninsula Applied Research Collaboration (PenARC)
• Professor James Palmer, National Medical Director (Specialised Services), NHS England
• Representation from individuals with lived experience (2)
• Representation from parents of individuals with lived experience (2)