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Re-establishing the UK acromegaly registry (UKAR): a patient-centered survey of priorities and expectations

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By Sadia Nasir, Aisha Elamin, Jessica Davis, Loughery Paul Benjamin
| endocrine-abstracts.org
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.
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