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 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 dedicate time to research and ongoing service evaluation.
• living systematic evidence review – maintaining an up-to-date understanding of the latest international research, informing front line clinical practice (NIHR commissioned)
• a priority setting partnership – working with the James Lind Alliance to provide the opportunity for children, young people, parents, health, social care and education professionals to inform the direction of future research, designed to respond to their needs
• a planned puberty supressing hormone study – being developed through a joint programme between NHS England and NIHR to help us better understand the relative benefits and harms of ‘puberty blocking’ treatments in children approaching, or experiencing, puberty. Subject to securing the necessary research and ethical approvals, the study is expected to open to recruitment by early 2025
• learning through information – establishing and delivering a common information set across all CYP gender services, paired with a clear and open consent process for children and their families. This will enable anonymised data to be used to understand the needs of children referred into NHS services, their experience and outcomes
• a data linkage study – as well proactively engaging with children, young people and families currently engaged with gender services, this study will help us to also learn from the experience and outcomes of young adults who accessed previous models of NHS care

The study into the potential benefits and harms of puberty suppressing hormones as a treatment option for children and young people with gender incongruence is being developed through the National Research Collaboration Programme (NCRP) in place between NHS England and the National Institute for Health and Care Research (NIHR). The NRCP joint programme provides a collaborative approach to study development; studies being progressed through this route still 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, as well as securing other important research approvals, including ethics committee approval.

It is envisaged that children and young people in both England and Wales 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 also continue to receive comprehensive psychosocial support.

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 engagement with a range of stakeholders, including children and young people referred into NHS gender services and their families or carers.

Professor Emily Simonoff has been confirmed as Chief Investigator for the study. Emily is Professor of Child and Adolescent Psychiatry at the Institute of Psychiatry, Psychology and Neuroscience, King’s College London, where she is also currently Head of the Department of Child and Adolescent Psychiatry and Director of the King’s Maudsley Partnership for Children and Young People. She has extensive research experience and is also academic lead for the Child and Adolescent Mental Health Services Clinical Academic Group at the South London and Maudsley NHS Foundation Trust. The research will be co-sponsored by King’s College London and the South London and Maudsley NHS Foundation Trust.

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)
• Professor Patrick Chinnery, Medical Research Council (MRC)
• Professor Steve Turner, President of the Royal College of Paediatrics and Child Health (RCPCH)
• 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 Helen Griffiths, Great Ormond Street Hospital for Children NHS Foundation Trust
• Dr Troy Tranah, South London and Maudsley NHS Foundation Trust
• Dr Bidisha Lahoti, Guy’s and St Thomas’ NHS Foundation Trust
• Dr Julie Alderson, University Hospitals Bristol NHS Foundation Trust 
• Stephen Tomlin, Consultant Pharmacist at Great Ormond Street Hospital
• To be confirmed, Clinical leadership representation from Learning Disabilities and Autism, NHS England
• 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
• (To be confirmed) Data sub-group chair information officer
• Dr Hilary Cass, National Specialty Advisor (Gender) and Research sub-group chair
• (To be confirmed) Quality improvement sub-group chair
• (To be confirmed) Representation from individuals with lived experience
• Representation from parents of people with lived experience (1)