Protected characteristics in the UK acromegaly registry - opportunities for improvement

Loughrey Paul Benjamin; Ahmed Doua S; Sonia Kaniuka-Jakubowska; Aisha Elamin; Jess Davis; Tara Kearney; Maralyn Druce; Daniel Flanagan; Prakash Abraham; Steve Orme; John Ayuk; John Wass; Higham Claire E

doi:10.1530/endoabs.109.P166

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Endocrine Abstracts (2025) 109 P166 | DOI: 10.1530/endoabs.109.P166

SFEBES2025 Poster Presentations Neuroendocrinology and Pituitary (48 abstracts)

Protected characteristics in the UK acromegaly registry – opportunities for improvement

Paul Benjamin Loughrey ^1,2 , Doua S Ahmed ² , Sonia Kaniuka-Jakubowska ³ , Aisha Elamin ⁴ , Jess Davis ⁵ , Tara Kearney ⁶ , Maralyn Druce ⁷ , Daniel Flanagan ⁸ , Prakash Abraham ⁹ , Steve Orme ¹⁰ , John Ayuk ^11,12 , John Wass ¹³ & Claire E Higham ^14,15

Author affiliations

¹Patrick G Johnston Centre for Cancer Research, Queen’s University Belfast, Belfast, United Kingdom; ²Regional Centre for Endocrinology and Diabetes, Royal Victoria Hospital, Belfast, United Kingdom; ³Faculty of Medicine, Medical University of Gdansk, Department of Endocrinology and Internal Medicine, Gdansk, Poland; ⁴Sheffield Teaching Hospitals NHS Foundation Trust, Department of Endocrinology, Sheffield, United Kingdom; ⁵Society for Endocrinology, Bristol, United Kingdom; ⁶Department of Endocrinology, Salford Royal Foundation Trust, Salford, United Kingdom; ⁷Centre for Endocrinology, William Harvey Research Institute, Barts and the London School of Medicine and Dentistry, Queen Mary University of London, London, United Kingdom; ⁸University Hospital Plymouth, Department of Endocrinology, Plymouth, United Kingdom; ⁹Aberdeen Royal Infirmary, Aberdeen, United Kingdom; ¹⁰St James’ University Hospital, Leeds Teaching Hospitals NHS Trust, Department of Endocrinology, Leeds Centre for Diabetes and Endocrinology, Leeds, United Kingdom; ¹¹Birmingham Health Partners, Centre for Endocrinology, Diabetes and Metabolism, Birmingham, United Kingdom; ¹²Queen Elizabeth Hospital Birmingham, Department of Endocrinology, Birmingham, United Kingdom; ¹³Oxford University Hospitals NHS Foundation Trust, Department of Endocrinology at the Oxford Centre for Diabetes, Endocrinology and Metabolism, Oxford, United Kingdom; ¹⁴The Christie NHS Foundation Trust, Manchester, United Kingdom; ¹⁵Division of Cancer Sciences, The University of Manchester, Manchester, United Kingdom

Background: The UK acromegaly registry (UKAR) was established in 1997 and holds data on 3,568 patients diagnosed with acromegaly. The Society for Endocrinology UKAR steering committee intend to relaunch this initiative. The National Institute for Healthcare Research (NIHR) has an equality, diversity and inclusion strategy. One theme is widening access and participation for greater diversity and inclusion.

Aim: To measure the UKAR dataset against the nine characteristics highlighted by NIHR and protected by the Equality Act 2010.

Methods: The existing UKAR dataset was measured against the nine protected characteristics stipulated in the NIHR strategy. Measures from the Office for National Statistics were used to infer socioeconomic status of the UKAR population.

Results: Data for 3,568 patients were reviewed. There are no specific disability data held in the registry. Age is available for 3,500 (98%) patients. Ethnicity is available for 2,286 (64%) and 2,179 (95%) of these patients were white. Sex is available in 3,495 (98%) with 1,720 (49%) of these patients being female. Gender is not documented for any patients. No data are available with regards sexual orientation, marriage/civil partnership status or religion/belief. Pregnancy data are rare (46/3,358, 1%) and not systematically collected in the registry. There are no data regarding socio-economic status. When considering Office for National Statistics data, the UKAR centres tend to lie in global cluster C (17/32, 53%) and economic cluster A (20/29, 69%); associated with low healthy life expectancy, low employment rate and low income.

Conclusion: The UKAR is a significant rare disease resource; however, when measured against the NIHR equality, diversity and inclusion strategy, it is suboptimal. Direct socioeconomic data are not available and ethnicity data indicate a lack of diversity. These characteristics must be systematically collected in future UKAR recruitment to make the dataset as diverse and representative as possible.