As the Society celebrates its 80th anniversary, it does so not only by reflecting on a proud history of scientific discovery, but by embracing a future defined by innovation, collaboration and real-world impact. Few initiatives capture this spirit more clearly than the Society’s Real-World Studies (RWS) programme. This ambitious, community-driven effort is reshaping how endocrine research is conducted and how patient care is delivered.
'We are now recruiting to three studies with over 800 participants, with two more launching this year and others in development.'
Born from a strategic commitment to better understand real-life treatment and care pathways, the RWS programme represents a step change in endocrinology. By capturing data from routine clinical practice and directly from patients themselves, it is transforming everyday healthcare experiences into meaningful, actionable evidence. This aligns powerfully with the Society’s mission to ‘bring together the global endocrine community to share ideas and advance scientific and clinical education and research’.
As Jessica Davis, the Society’s Director of Clinical Programmes, reflects, ‘Since launching our Real-World Studies, the programme has gone from strength to strength. We are now recruiting to three studies with over 800 participants, with two more launching this year and others in development. Our ambition to capture data across all endocrine networks is well within reach, supported by 57 sites across the UK and Ireland – and growing every week.’
As of May 2026, the total number of patients recruited to studies:
• 399 PROMMIS
• 320 UKI-SAT
• 225 CORE
A COLLECTIVE COMMITMENT
This rapid progress reflects not only a strong vision, but the collective commitment of the endocrine community across the UK and Ireland. Clinicians, researchers and patients are coming together to build something far greater than the sum of its parts: a shared infrastructure that will underpin the next generation of endocrine discovery and care.
At the heart of the RWS programme is a bold and distinctive vision, to provide rich, robust, patient-centric data that advance science, improve outcomes and strengthen the Society’s position as a global leader. What sets this work apart is not simply its scale, but its depth.
As Society President Kristien Boelaert explains, ‘The Real-World Studies represent the future of endocrinology, where collaboration, data and patient experience come together to drive cutting-edge science and better care. By harnessing the power of real-world evidence at scale, we are not only advancing our understanding of endocrine conditions but positioning our community to lead globally in delivering more personalised, effective and equitable care.’
BRIDGING A GAP
This ability to bridge the gap between controlled clinical trials and real-world experience is one of the programme’s defining strengths. Traditional trials, while essential, cannot always capture the full complexity of patient journeys, particularly across diverse populations and healthcare settings. The RWS programme addresses this gap directly, creating a more complete and inclusive evidence base. Crucially, it does so through an innovative combination of datasets.
This integration of clinical insight with patient-reported experience is transformative. It enables a deeper understanding not only of how treatments perform, but of how they are experienced, unlocking new opportunities for personalised, patient-centred care.
'By harnessing the power of real-world evidence at scale, we are not only advancing our understanding of endocrine conditions but positioning our community to lead globally in delivering more personalised, effective and equitable care.’
A GROWING PORTFOLIO
The programme’s ambition is already being realised through a growing portfolio of national studies, each addressing critical areas of endocrine health:
• Clinical Observations and Research on Engagement in Weight Management Services (CORE)
• National (UK and Ireland) Study of Adrenal Tumours (UKI-SAT/NSAT)
• Patient-reported outcomes for menopause management intervention study (PROMMIS)
• The Hyperthyroidism Research and Outcomes Information Database (THYROID)
• Pituitary Tumours, including the UK Acromegaly Register
• UK Natural History Study of Hypoparathyroidism (UK NHS HypoPT)
Together, these studies reflect a strategic, condition-focused approach, with the long-term goal of building a comprehensive registry ecosystem spanning more than 30 endocrine conditions. This breadth ensures that the RWS programme will not only generate deep insights within individual disease areas but also enable a system-wide understanding of endocrine care.
The impact of this work is already being felt. By integrating patient-generated data with clinical records, the registries are creating one of the richest datasets in endocrinology. This empowers clinicians to make more informed decisions, supports researchers in identifying new patterns and trends, and ultimately helps ensure that patients receive the right care at the right time.
INCLUSIVE AND COLLABORATIVE
The emphasis on inclusivity is central to the RWS philosophy. By capturing data from populations that are often underrepresented in traditional research, the programme is helping to ensure that advances in endocrinology are equitable and relevant to all.
Beyond its scientific and clinical contributions, the RWS programme is also strengthening the Society’s sustainability and partnerships. By generating high-quality, ethically governed data, it creates opportunities for collaboration with industry and other stakeholders, while ensuring that any commercial returns are reinvested into the Society’s charitable aims.
PREPARING FOR THE FUTURE
Looking ahead, the potential for growth is substantial. The methodologies developed through the RWS programme are highly replicable, opening the door to expansion across additional endocrine conditions and even into other areas of biomedical science.
The Society is uniquely positioned to lead this evolution, sharing its expertise, building new partnerships and extending its influence on a global scale.
As the Society for Endocrinology marks 80 years of progress, the RWS programme stands as a defining initiative of its future. It represents a shift from knowledge generation alone to knowledge in action, where data inform decisions, collaboration drives innovation, and research translates directly into better patient outcomes.
In this way, the RWS programme is more than a collection of studies. It is a statement of intent: that the future of endocrinology will be data-driven, patient-centred and globally connected, and that the Society will be at the forefront of making that future a reality
“PROMMIS will provide an innovative and unprecedented approach to scrutinising the efficacy and safety of several women’s health and menopause treatments, particularly relating to women from demographics underrepresented in formal clinical trials. The information collected has the potential to identify and guide tailored strategies and treatments that improve and optimise bespoke personalised menopause care and patient outcomes and ultimately improve postmenopausal health across demographics." DR ANNICE MUKHERJEE, PROMMIS Lead
“UKI-SAT is the first national longitudinal registry of its kind in the UK dedicated to malignant adrenal tumours. This systematic collection of data will help identify the greatest unmet clinical needs for these patients and will facilitate coordinated clinical research efforts and collaboration at a national and international level." DR RUTH CASEY, UKI-SAT Lead and Clinical Committee Chair
"Treatment approaches for hyperthyroidism vary, but their long-term impact on patients is significant. By capturing real-world data through a national register, we can better understand outcomes, monitor emerging therapies, and support more confident, informed decisions, ultimately improving care and long-term health." PROFESSOR ONYEBUCHI OKOSIEME, THYROID Lead
"The RWS programme is a powerful example of the Society delivering on its charitable purpose: improving patient care, advancing research, supporting professional practice and shaping the future of endocrinology. By turning everyday clinical care into high-quality evidence, we are giving our members and industry partners the tools to answer the questions that trials can’t. What makes our programme world-leading is its ability to combine robust clinical data with rich, individually reported patient data, giving a uniquely comprehensive picture of disease, treatment and outcomes. No other endocrine registries are doing this at scale, and it places our members at the forefront of global endocrinology, while creating a sustainable asset that reinvests commercial revenues back into the Society." KATE SARGENT, CEO, Society for Endocrinology
Find out more and sign up to our real-world studies.
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