| Title: | State of the art and consensus statements by healthcare providers, patients, and caregivers on continuous glucose monitoring in liver glycogen storage diseases |
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| Authors: | ID Derks, Terry G. J. (Author)
ID Overduin, Ruben J. (Author)
ID Grünert, Sarah C. (Author)
ID Rossi, Alessandro (Author)
ID Grošelj, Urh (Research coworker)
ID Drole Torkar, Ana (Research coworker), et al. |
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| Files: |  PDF - Presentation file, download (761,39 KB)
MD5: C8D5DF3B0BE2CB63272D2ED147D25080
 URL - Source URL, visit https://onlinelibrary.wiley.com/doi/epdf/10.1002/jimd.70040
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| Language: | English |
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| Typology: | 1.01 - Original Scientific Article |
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| Organization: |  UKC LJ - Ljubljana University Medical Centre
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| Abstract: | Continuous glucose monitoring (CGM) is increasingly used although not officially registered for the management of people liv-ing with liver glycogen storage diseases (GSDs). The aims of this study were twofold: (a) to investigate the current experiencesof healthcare providers (HCPs), patients, and caregivers using CGM to monitor glucose concentrations in liver GSDs, and (b)to formulate consensus statements. Two web-based questionnaires were distributed, one for HCPs and one for patients and/ortheir caregivers. The questionnaires collected data on demographics and epidemiology, current use of CGM, and opinions andstatements about CGM in GSDs. For the statements, respondents rated their agreement on a 5-point Likert scale, and the consen-sus level was set at 75%. One Hundred Fourteen HCPs (including 87 physicians and 26 dietitians) from 28 countries responded,representing care of approximately 3800 liver GSD patients. Additionally, 148 GSD patients and/or their caregivers from 21 coun-tries responded, mainly representing GSD Ia (n = 50), GSD Ib (n = 56), GSD III (n = 14), and GSD IX (n = 18). The median age toconsider starting to use CGM was 6 and 2 months for HCPs and GSD families, respectively. Out of 16 statements common to thetwo questionnaires, HCPs and patients/caregivers reached consensus on 12 statements in both groups. Use of CGM is consideredstandard of care by both HCPs and GSD families, but reimbursement of CGM devices is challenging. Compared to diabetes melli-tus, CGM should be applied differently in liver GSDs. Consensus guidelines are warranted on the use of CGM in liver GSDs, bothin routine healthcare and in clinical trials.This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium,provided the original work is properly cited.© 2025 The Author(s). Journal of Inherited Metabolic Disease published by John Wiley & Sons Ltd on behalf of SSIEM.Terry G. J. Derks and Ruben J. Overduin are shared first authors.Sarah C. Grünert and Alessandro Rossi are shared last authors.The Members of the CGM GSD Collaborators Group are given in Appendix A.Abbreviations: CGM, continuous glucose monitoring; DM, diabetes mellitus; FBS, Fanconi-Bickel syndrome; GSD, glycogen storage disease; HCP, healthcareprovider; SMBG, self-monitoring blood glucose; TAR, time above range; TBR, time below range; TIR, time in range. |
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| Keywords: | glycemic control, management, rare disease. survey, CGM, GSD, glycogen storage disease |
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| Publication status: | Published |
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| Publication version: | Version of Record |
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| Year of publishing: | 2025 |
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| Number of pages: | 14 str. |
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| Numbering: | Vol. 48, iss. 3, ǂ[article no.] ǂe70040 |
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| PID: | 20.500.12556/DiRROS-28068  |
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| UDC: | 616-053.2 |
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| ISSN on article: | 1573-2665 |
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| DOI: | 10.1002/jimd.70040 |
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| COBISS.SI-ID: | 238186755 |
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| Note: | Nasl. z nasl. zaslona;
Opis vira z dne 3. 6. 2025;
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| Publication date in DiRROS: | 09.03.2026 |
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| Views: | 322 |
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| Downloads: | 218 |
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