EVALUATING THE USABILITY OF GLOBE-REG, AN INTERNATIONAL REGISTRY FOR NOVEL THERAPIES IN RARE BONE AND ENDOCRINE CONDITIONS
Author(s)
Rachael Harley, MBChB1, Jillian Bryce, PhD2, Minglu Chen, PhD2, Sanhita Koley, MSc2, Joseph McElvaney, MBChB2, Malika Alimussina, MPH, PhD2, Syed Faisal Ahmed, FRCPCH2.
1Developmental Endocrinology Research Group, University of Glasgow, Royal Hospital For Children, Glasgow, United Kingdom, 2Office for Rare Conditions, University of Glasgow, Glasgow, United Kingdom.
1Developmental Endocrinology Research Group, University of Glasgow, Royal Hospital For Children, Glasgow, United Kingdom, 2Office for Rare Conditions, University of Glasgow, Glasgow, United Kingdom.
OBJECTIVES: The Global Registry for Novel Therapies in Rare Bone and Endocrine Conditions (GloBE-Reg) was established in 2022 to support safety and effectiveness studies of multiple therapies. Since its launch in 2022, it has enrolled 5,577 cases from 52 centres across 25 countries. As part of its operations, it engages with users through regular remote workshops and also regularly assesses the usability of the platform.
METHODS: The platform usability was assessed in 2024-25 by annual user surveys and brief surveys that pop-up during active use of the platform. In combination, these surveys assess completion time, ease of use and clarity of fields. Both surveys were scored using a 5-point Likert scale.
RESULTS: Annual surveys were completed by 53 users from 27 centres across 20 countries and this included 24 responses from users completing surveys in both years. The median completion time in 2024 and 2025 was 43 min (range, 7, 190) and 21 min (7, 190), respectively (NS). Overall, median ease-of-use across all domains was 4 out of a maximum of 5 (1, 5). Median clarity scores were 4.3 (1, 5) and 5 (1, 5) for 2024 and 2025, respectively (NS). Total completion time was inversely associated with the overall ease-of-use score (p=0.0002). The pop-up survey yielded 795 evaluable responses from 35 centres across 25 countries. The combined median ease-of-use score for all sections of the registry was 4 (1, 5) for 2024 and 5 (1, 5) for 2025 (p<0.0001). Analysis of the pop-up survey for those who reported in 2024 and 2025 showed an improvement in ease-of-use scores from a median score of 4 (1, 5) to 5 (2, 5) (p=0.002).
CONCLUSIONS: GloBE-Reg demonstrated favourable usability, with shorter completion times associated with higher ease-of-use scores. Continued monitoring of user experience will support sustainable real-world data collection and registry engagement.
METHODS: The platform usability was assessed in 2024-25 by annual user surveys and brief surveys that pop-up during active use of the platform. In combination, these surveys assess completion time, ease of use and clarity of fields. Both surveys were scored using a 5-point Likert scale.
RESULTS: Annual surveys were completed by 53 users from 27 centres across 20 countries and this included 24 responses from users completing surveys in both years. The median completion time in 2024 and 2025 was 43 min (range, 7, 190) and 21 min (7, 190), respectively (NS). Overall, median ease-of-use across all domains was 4 out of a maximum of 5 (1, 5). Median clarity scores were 4.3 (1, 5) and 5 (1, 5) for 2024 and 2025, respectively (NS). Total completion time was inversely associated with the overall ease-of-use score (p=0.0002). The pop-up survey yielded 795 evaluable responses from 35 centres across 25 countries. The combined median ease-of-use score for all sections of the registry was 4 (1, 5) for 2024 and 5 (1, 5) for 2025 (p<0.0001). Analysis of the pop-up survey for those who reported in 2024 and 2025 showed an improvement in ease-of-use scores from a median score of 4 (1, 5) to 5 (2, 5) (p=0.002).
CONCLUSIONS: GloBE-Reg demonstrated favourable usability, with shorter completion times associated with higher ease-of-use scores. Continued monitoring of user experience will support sustainable real-world data collection and registry engagement.
Conference/Value in Health Info
2026-11, ISPOR Europe 2026, Vienna, Austria
Value in Health, Volume 29, Issue 12S
Code
RWD65
Topic
Real World Data & Information Systems
Topic Subcategory
Data Protection, Integrity, & Quality Assurance, Distributed Data & Research Networks, Health & Insurance Records Systems
Disease
Pediatrics, Rare & Orphan Diseases