Endocrine Abstracts

Background: The UK Acromegaly Registry (UKAR), established in 1997 to collect comprehensive data on acromegaly and gigantism, is currently on hold. A Patient and Public Involvement and Engagement (PPIE) Survey was conducted from 15 August to 30 September 2024 via Pituitary Foundation communication channels to gather views on the potential re-opening of the registry, focusing on patient preferences regarding data collection and registry functionalities.

Methods: The UKAR steering group developed a ten-question PPIE survey, which was refined using the NHS readability tool to ensure accessibility. It was distributed to approx. 9,300 individuals via the Pituitary Foundation newsletter and social media, reaching approximately 27,000 people. Responses were received from 67 participants, with nearly 96% being patients diagnosed with acromegaly or gigantism. The survey focused on prior awareness of the UKAR, support for its reactivation, preferences for data inclusion, and patient expectations from the registry.

Results: Among the 67 respondents, 3 were healthcare professionals. A significant portion (73.1%) were unaware of the UKAR prior to the survey. Despite this, there was strong support (86.6%) for reactivating the registry. The key data areas that patients deemed essential for inclusion were treatment history (98.5%), treatment efficacy (95.5%), and the impact of the condition on their quality of life (83.6%). On exploring communication preferences, most respondents (86.6%) preferred to receive the registry’s updates online. Additionally, 53.7% expressed interest in using a mobile app for future communications. Regarding data updates, 51.5% of participants wanted their information updated annually, while 21.2% preferred updates triggered by changes in their health.

Conclusion: This survey shows considerable patient endorsement for the reactivation of the UKAR. Patients emphasised the need to include treatment data, quality-of-life measures, and research input. The insights gathered will guide the development of a modernised, patient-centred UKAR that enhances research, improves clinical care, and fosters patient engagement.