{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,12]],"date-time":"2026-10-12T18:09:45Z","timestamp":1791828585687,"version":"4.3.4"},"reference-count":31,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2025,5,13]],"date-time":"2025-05-13T00:00:00Z","timestamp":1747094400000},"content-version":"vor","delay-in-days":12,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["J of Inher Metab Disea"],"published-print":{"date-parts":[[2025,5]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:p>\n                    Continuous glucose monitoring (CGM) is increasingly used although not officially registered for the management of people living with liver glycogen storage diseases (GSDs). The aims of this study were twofold: (a) to investigate the current experiences of healthcare providers (HCPs), patients, and caregivers using CGM to monitor glucose concentrations in liver GSDs, and (b) to formulate consensus statements. Two web\u2010based questionnaires were distributed, one for HCPs and one for patients and\/or their caregivers. The questionnaires collected data on demographics and epidemiology, current use of CGM, and opinions and statements about CGM in GSDs. For the statements, respondents rated their agreement on a 5\u2010point Likert scale, and the consensus 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 countries responded, mainly representing GSD Ia (\n                    <jats:italic>n<\/jats:italic>\n                    \u2009=\u200950), GSD Ib (\n                    <jats:italic>n<\/jats:italic>\n                    \u2009=\u200956), GSD III (\n                    <jats:italic>n<\/jats:italic>\n                    \u2009=\u200914), and GSD IX (\n                    <jats:italic>n<\/jats:italic>\n                    \u2009=\u200918). The median age to consider starting to use CGM was 6 and 2\u2009months for HCPs and GSD families, respectively. Out of 16 statements common to the two questionnaires, HCPs and patients\/caregivers reached consensus on 12 statements in both groups. Use of CGM is considered standard of care by both HCPs and GSD families, but reimbursement of CGM devices is challenging. Compared to diabetes mellitus, CGM should be applied differently in liver GSDs. Consensus guidelines are warranted on the use of CGM in liver GSDs, both in routine healthcare and in clinical trials.\n                  <\/jats:p>","DOI":"10.1002\/jimd.70040","type":"journal-article","created":{"date-parts":[[2025,5,13]],"date-time":"2025-05-13T21:30:47Z","timestamp":1747171847000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":5,"title":["State of the Art and Consensus Statements by Healthcare Providers, Patients, and Caregivers on Continuous Glucose Monitoring in Liver Glycogen Storage Diseases"],"prefix":"10.1002","volume":"48","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-7259-1095","authenticated-orcid":false,"given":"Terry G. J.","family":"Derks","sequence":"first","affiliation":[{"name":"Department of Metabolic Diseases Beatrix Children's Hospital, University Medical Center Groningen, University of Groningen  Groningen the Netherlands"},{"name":"UMCG Center of Expertise for Carbohydrate, Fatty Acid Oxidation and Ketone Bodies Disorders University Medical Center Groningen  Groningen the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0005-9761-7502","authenticated-orcid":false,"given":"Ruben J.","family":"Overduin","sequence":"additional","affiliation":[{"name":"Department of Metabolic Diseases Beatrix Children's Hospital, University Medical Center Groningen, University of Groningen  Groningen the Netherlands"},{"name":"UMCG Center of Expertise for Carbohydrate, Fatty Acid Oxidation and Ketone Bodies Disorders University Medical Center Groningen  Groningen the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5986-0468","authenticated-orcid":false,"given":"Sarah C.","family":"Gr\u00fcnert","sequence":"additional","affiliation":[{"name":"Department of General Pediatrics, Adolescent Medicine and Neonatology, Faculty of Medicine Medical Center\u2010University of Freiburg  Freiburg Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1689-4948","authenticated-orcid":false,"given":"Alessandro","family":"Rossi","sequence":"additional","affiliation":[{"name":"Department of Metabolic Diseases Beatrix Children's Hospital, University Medical Center Groningen, University of Groningen  Groningen the Netherlands"},{"name":"UMCG Center of Expertise for Carbohydrate, Fatty Acid Oxidation and Ketone Bodies Disorders University Medical Center Groningen  Groningen the Netherlands"},{"name":"Department of Translational Medicine, Section of Pediatrics University of Naples \u201cFederico II\u201d  Naples Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"name":"CGM GSD Collaborators Group","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2025,5,13]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.1038\/S41572\u2010023\u201000456\u2010Z"},{"key":"e_1_2_9_3_1","doi-asserted-by":"publisher","DOI":"10.2337\/dc17\u20101600"},{"key":"e_1_2_9_4_1","doi-asserted-by":"publisher","DOI":"10.2337\/dci19\u20100028"},{"key":"e_1_2_9_5_1","doi-asserted-by":"publisher","DOI":"10.1016\/S2213\u20108587(22)00319\u20109"},{"key":"e_1_2_9_6_1","doi-asserted-by":"publisher","DOI":"10.1177\/1932296814541810"},{"key":"e_1_2_9_7_1","doi-asserted-by":"publisher","DOI":"10.1177\/1932296819855670"},{"key":"e_1_2_9_8_1","doi-asserted-by":"publisher","DOI":"10.1177\/1932296820958754"},{"key":"e_1_2_9_9_1","doi-asserted-by":"publisher","DOI":"10.1007\/s13679\u2010022\u201000482\u20100"},{"key":"e_1_2_9_10_1","doi-asserted-by":"publisher","DOI":"10.1111\/pedi.13029"},{"key":"e_1_2_9_11_1","doi-asserted-by":"publisher","DOI":"10.1002\/JIMD.12383"},{"key":"e_1_2_9_12_1","doi-asserted-by":"publisher","DOI":"10.1210\/clinem\/dgac411"},{"key":"e_1_2_9_13_1","doi-asserted-by":"publisher","DOI":"10.3389\/fendo.2023.1116864"},{"key":"e_1_2_9_14_1","doi-asserted-by":"publisher","DOI":"10.1002\/JIMD.12178"},{"key":"e_1_2_9_15_1","unstructured":"NICE guideline \u201cType 1 Diabetes in Adults: Diagnosis and Management \u201d(2022) https:\/\/www.nice.org.uk\/guidance\/ng17."},{"key":"e_1_2_9_16_1","doi-asserted-by":"publisher","DOI":"10.2337\/dc23\u2010S007"},{"key":"e_1_2_9_17_1","doi-asserted-by":"publisher","DOI":"10.2337\/dci21\u20100043"},{"key":"e_1_2_9_18_1","doi-asserted-by":"publisher","DOI":"10.1055\/a\u20101018\u20108963"},{"key":"e_1_2_9_19_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00431\u2010002\u20101016\u20107"},{"key":"e_1_2_9_20_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00431\u2010002\u20101017\u20106"},{"key":"e_1_2_9_21_1","doi-asserted-by":"publisher","DOI":"10.1038\/GIM.2014.128"},{"key":"e_1_2_9_22_1","doi-asserted-by":"publisher","DOI":"10.1097\/GIM.0b013e3181e655b6"},{"key":"e_1_2_9_23_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41436\u2010018\u20100364\u20102"},{"key":"e_1_2_9_24_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ymgme.2023.107525"},{"key":"e_1_2_9_25_1","doi-asserted-by":"publisher","DOI":"10.1159\/000531766"},{"key":"e_1_2_9_26_1","volume-title":"GeneReviews","author":"Bali D. S.","year":"2021"},{"key":"e_1_2_9_27_1","doi-asserted-by":"publisher","DOI":"10.2337\/diab.26.11.1016"},{"key":"e_1_2_9_28_1","doi-asserted-by":"publisher","DOI":"10.1089\/dia.2020.0042"},{"key":"e_1_2_9_29_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10545\u2010018\u20100167\u20102"},{"key":"e_1_2_9_30_1","doi-asserted-by":"publisher","DOI":"10.1002\/jimd.12160"},{"key":"e_1_2_9_31_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10545\u2010016\u20109932\u20102"},{"key":"e_1_2_9_32_1","doi-asserted-by":"publisher","DOI":"10.3390\/ijms21176286"}],"container-title":["Journal of Inherited Metabolic Disease"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/jimd.70040","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,22]],"date-time":"2025-10-22T04:18:40Z","timestamp":1761106720000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/jimd.70040"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,5]]},"references-count":31,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2025,5]]}},"alternative-id":["10.1002\/jimd.70040"],"URL":"https:\/\/doi.org\/10.1002\/jimd.70040","archive":["Portico"],"relation":{},"ISSN":["0141-8955","1573-2665"],"issn-type":[{"value":"0141-8955","type":"print"},{"value":"1573-2665","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,5]]},"assertion":[{"value":"2025-02-04","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-04-28","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-05-13","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}],"article-number":"e70040"}}