{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,7]],"date-time":"2026-01-07T14:39:44Z","timestamp":1767796784864,"version":"3.49.0"},"reference-count":35,"publisher":"BMJ","issue":"12","license":[{"start":{"date-parts":[[2025,12,2]],"date-time":"2025-12-02T00:00:00Z","timestamp":1764633600000},"content-version":"unspecified","delay-in-days":1,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"name":"Saskatchewan Centre for Patient-Oriented Research","award":["427761-1084"],"award-info":[{"award-number":["427761-1084"]}]},{"DOI":"10.13039\/100008920","name":"University of Saskatchewan","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100008920","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000024","name":"CIHR","doi-asserted-by":"crossref","award":["492634"],"award-info":[{"award-number":["492634"]}],"id":[{"id":"10.13039\/501100000024","id-type":"DOI","asserted-by":"crossref"}]},{"DOI":"10.13039\/501100000024","name":"Canadian Institutes of Health Research","doi-asserted-by":"crossref","award":["185352"],"award-info":[{"award-number":["185352"]}],"id":[{"id":"10.13039\/501100000024","id-type":"DOI","asserted-by":"crossref"}]}],"content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["BMJ Open"],"accepted":{"date-parts":[[2025,11,14]]},"published-print":{"date-parts":[[2025,12]]},"abstract":"<jats:sec>\n                    <jats:title>Objectives<\/jats:title>\n                    <jats:p>To develop survey items for a national patient registry on Long COVID using a modified Delphi process.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design<\/jats:title>\n                    <jats:p>This study was based on a modified Delphi process involving three rounds of anonymous, online surveys to develop consensus on and prioritise survey elements to be included in a minimum dataset for use in a national patient registry in Canada. Initial Long COVID items were identified through an environmental scan of the literature.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Setting<\/jats:title>\n                    <jats:p>This study focused on healthcare systems in Canada and was conducted online.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Participants<\/jats:title>\n                    <jats:p>A panel of 52 experts (patients, caregivers, clinicians and researchers) participated in all three rounds of the online survey. These participants were recruited through the Long COVID Web network and word of mouth.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>In total, 243 survey elements related to care, quality of life and symptoms were included in round 1 of the survey. 200 reached consensus and moved to round 2 with two additional elements being developed based on open-ended responses. In round 2, participants ranked these survey elements and 34 advanced. In round 3, 33 survey elements met the threshold of consensus with one added a priori. The 33 survey elements were then used to develop a Long COVID minimum dataset, which consists of 48 items.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>The findings affirm broad consensus for collecting data related to fatigue, post-exertional malaise, cardiovascular issues, respiratory problems and cognitive issues. This highlighted the desire for quality-of-life indicators and information related to care utilisation, quality and access.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1136\/bmjopen-2025-111474","type":"journal-article","created":{"date-parts":[[2025,12,3]],"date-time":"2025-12-03T18:21:28Z","timestamp":1764786088000},"page":"e111474","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":0,"title":["Developing a minimum dataset for a national patient registry on Long COVID in Canada: a Delphi consensus-based study"],"prefix":"10.1136","volume":"15","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-6825-6756","authenticated-orcid":false,"given":"Kathrina","family":"Mazurik","sequence":"first","affiliation":[{"name":"University of Saskatchewan, Saskatoon, Saskatchewan, Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7015-1419","authenticated-orcid":false,"given":"Adelaide","family":"Amah","sequence":"additional","affiliation":[{"name":"Research, Saskatchewan Health Authority, Saskatoon, Saskatchewan, Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0009-0000-2134-4310","authenticated-orcid":false,"given":"Donna Ioana","family":"Dumitrescu","sequence":"additional","affiliation":[{"name":"University of Saskatchewan, Saskatoon, Saskatchewan, Canada"},{"name":"Research Department, Saskatchewan Health Authority, Regina, Saskatchewan, Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Hammed","family":"Ejalonibu","sequence":"additional","affiliation":[{"name":"University of Saskatchewan, Saskatoon, Saskatchewan, Canada"},{"name":"Saskatchewan Health Quality Council, Saskatoon, Saskatchewan, Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Bansari","family":"Chavda","sequence":"additional","affiliation":[{"name":"Community Health & Epidemiology, University of Saskatchewan College of Medicine, Saskatoon, Saskatchewan, Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Daphne","family":"Kemp","sequence":"additional","affiliation":[{"name":"University of Saskatchewan, Saskatoon, Saskatchewan, Canada"},{"name":"Saskatchewan Health Authority, Saskatoon, Saskatchewan, Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Donna Ellen","family":"Frederick","sequence":"additional","affiliation":[{"name":"Patient partner, Saskatoon, Saskatchewan, Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Cindy","family":"Mclean","sequence":"additional","affiliation":[{"name":"Patient partner, Saskatoon, Saskatchewan, Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Simon","family":"D\u00e9cary","sequence":"additional","affiliation":[{"name":"University of Sherbrooke, Sherbrooke, Quebec, Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1972-6253","authenticated-orcid":false,"given":"Andrea","family":"Gruneir","sequence":"additional","affiliation":[{"name":"Department of Family Medicine, University of Alberta, Edmonton, Alberta, Canada"},{"name":"Institute for Clinical Evaluative Sciences, Toronto, Ontario, Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0433-0632","authenticated-orcid":false,"given":"Gayle","family":"Halas","sequence":"additional","affiliation":[{"name":"Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, Manitoba, Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Alison","family":"Hoens","sequence":"additional","affiliation":[{"name":"Department of Physical Therapy, The University of British Columbia Faculty of Medicine, Vancouver, British Columbia, Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3170-031X","authenticated-orcid":false,"given":"Michelle","family":"Kho","sequence":"additional","affiliation":[{"name":"School of Rehabilitation Science, McMaster University, Hamilton, Ontario, Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"name":"Long COVID Web","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8307-5125","authenticated-orcid":false,"given":"Gary","family":"Groot","sequence":"additional","affiliation":[{"name":"Community Health and Epidemiology, University of Saskatchewan, Saskatoon, Saskatchewan, Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"239","published-online":{"date-parts":[[2025,12,3]]},"reference":[{"key":"2026010703453306000_15.12.e111474.1","unstructured":"Kuang S , Earl S , Clarke J , et al . Experiences of Canadians with long-term symptoms following COVID-19. Statistics Canada; 2023. Available: https:\/\/www150.statcan.gc.ca\/n1\/en\/pub\/75-006-x\/2023001\/article\/00015-eng.pdf?st=5g_PRKCt"},{"key":"2026010703453306000_15.12.e111474.2","doi-asserted-by":"publisher","DOI":"10.1016\/S1473-3099(21)00703-9\/ATTACHMENT\/31179DEC-CF64-455B-BD13-6EF0045B7DD6\/MMC1.PDF"},{"key":"2026010703453306000_15.12.e111474.3","doi-asserted-by":"publisher","DOI":"10.1038\/s41579-022-00846-2"},{"key":"2026010703453306000_15.12.e111474.4","doi-asserted-by":"publisher","DOI":"10.1177\/01410768211032850"},{"key":"2026010703453306000_15.12.e111474.5","doi-asserted-by":"crossref","first-page":"715","DOI":"10.1016\/S2213-2600(22)00169-2","article-title":"A core outcome set for post-COVID-19 condition in adults for use in clinical practice and research: an international Delphi consensus study","volume":"10","author":"Munblit","year":"2022","journal-title":"Lancet Respir Med"},{"key":"2026010703453306000_15.12.e111474.6","doi-asserted-by":"crossref","first-page":"1101","DOI":"10.1016\/S2213-2600(23)00370-3","article-title":"Core outcome measurement instruments for use in clinical and research settings for adults with post-COVID-19 condition: an international Delphi consensus study","volume":"11","author":"Gorst","year":"2023","journal-title":"Lancet Respir Med"},{"key":"2026010703453306000_15.12.e111474.7","doi-asserted-by":"crossref","DOI":"10.1186\/s41687-024-00773-1","article-title":"A review of Patient Reported Outcome Measures (PROMs) for characterizing Long COVID (LC)-merits, gaps, and recommendations","volume":"8","author":"Ejalonibu","year":"2024","journal-title":"J Patient Rep Outcomes"},{"key":"2026010703453306000_15.12.e111474.8","doi-asserted-by":"crossref","DOI":"10.1186\/1745-6215-15-247","article-title":"Core Outcome Measures in Effectiveness Trials (COMET) initiative: protocol for an international Delphi study to achieve consensus on how to select outcome measurement instruments for outcomes included in a \u201ccore outcome set\u201d","volume":"15","author":"Prinsen","year":"2014","journal-title":"Trials"},{"key":"2026010703453306000_15.12.e111474.9","doi-asserted-by":"crossref","DOI":"10.1136\/bmjopen-2021-058725","article-title":"Development of a minimum dataset for subacute rehabilitation: a three-round e-Delphi consensus study","volume":"12","author":"Young","year":"2022","journal-title":"BMJ Open"},{"key":"2026010703453306000_15.12.e111474.10","doi-asserted-by":"crossref","first-page":"101044","DOI":"10.1016\/j.eclinm.2021.101044","article-title":"Cognitive deficits in people who have recovered from COVID-19","volume":"39","author":"Hampshire","year":"2021","journal-title":"EClinicalMedicine"},{"key":"2026010703453306000_15.12.e111474.11","doi-asserted-by":"publisher","DOI":"10.1002\/alz.12644"},{"key":"2026010703453306000_15.12.e111474.12","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pone.0298837","article-title":"SARS-CoV2 evokes structural brain changes resulting in declined executive function","volume":"19","author":"Deuter","year":"2024","journal-title":"PLoS One"},{"key":"2026010703453306000_15.12.e111474.13","doi-asserted-by":"crossref","DOI":"10.1186\/s12874-020-01029-4","article-title":"Improving design choices in Delphi studies in medicine: the case of an exemplary physician multi-round panel study with 100% response","volume":"20","author":"Veugelers","year":"2020","journal-title":"BMC Med Res Methodol"},{"key":"2026010703453306000_15.12.e111474.14","doi-asserted-by":"crossref","first-page":"11","DOI":"10.1097\/ACM.0b013e31823a8d99","article-title":"Commentary: the relative research unit: providing incentives for clinician participation in research activities","volume":"87","author":"Embi","year":"2012","journal-title":"Acad Med"},{"key":"2026010703453306000_15.12.e111474.15","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2648.2006.03716.x"},{"key":"2026010703453306000_15.12.e111474.16","unstructured":"Long COVID web. Long COVID Web, 2025."},{"key":"2026010703453306000_15.12.e111474.17","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pmed.1004326","article-title":"ACCORD (ACcurate COnsensus Reporting Document): A reporting guideline for consensus methods in biomedicine developed via a modified Delphi","volume":"21","author":"Gattrell","year":"2024","journal-title":"PLoS Med"},{"key":"2026010703453306000_15.12.e111474.18","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pmed.1004390","article-title":"ACcurate COnsensus Reporting Document (ACCORD) explanation and elaboration: Guidance and examples to support reporting consensus methods","volume":"21","author":"Logullo","year":"2024","journal-title":"PLoS Med"},{"key":"2026010703453306000_15.12.e111474.19","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pmed.1002447","article-title":"Core Outcome Set-STAndards for Development: The COS-STAD recommendations","volume":"14","author":"Kirkham","year":"2017","journal-title":"PLoS Med"},{"key":"2026010703453306000_15.12.e111474.20","doi-asserted-by":"crossref","DOI":"10.1136\/bmjopen-2024-090304","article-title":"Development of a minimum data set for long COVID: a Delphi study protocol","volume":"14","author":"Amah","year":"2024","journal-title":"BMJ Open"},{"key":"2026010703453306000_15.12.e111474.21","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pone.0020476","article-title":"Using and reporting the Delphi method for selecting healthcare quality indicators: a systematic review","volume":"6","author":"Boulkedid","year":"2011","journal-title":"PLoS One"},{"key":"2026010703453306000_15.12.e111474.22","doi-asserted-by":"crossref","DOI":"10.3389\/fpubh.2020.00457","article-title":"Delphi Technique in Health Sciences: A Map","volume":"8","author":"Niederberger","year":"2020","journal-title":"Front Public Health"},{"key":"2026010703453306000_15.12.e111474.23","article-title":"Use of Delphi in health sciences research: A narrative review","volume":"102","author":"Shang","year":"2023","journal-title":"Medicine (Abingdon)"},{"key":"2026010703453306000_15.12.e111474.24","unstructured":"Hsu CC , Sandford BA . The Delphi technique: making sense of consensus. 2025. Available: https:\/\/openpublishing.library.umass.edu\/pare\/article\/id\/1418\/"},{"key":"2026010703453306000_15.12.e111474.25","doi-asserted-by":"publisher","DOI":"10.1177\/000494417602000106"},{"key":"2026010703453306000_15.12.e111474.26","doi-asserted-by":"publisher","DOI":"10.1016\/j.jclinepi.2013.12.002"},{"key":"2026010703453306000_15.12.e111474.27","doi-asserted-by":"publisher","DOI":"10.1016\/j.techfore.2012.04.013"},{"key":"2026010703453306000_15.12.e111474.28","doi-asserted-by":"crossref","DOI":"10.1136\/bmjopen-2022-070184","article-title":"Establishing internationally accepted conceptual and operational definitions of social prescribing through expert consensus: a Delphi study","volume":"13","author":"Muhl","year":"2023","journal-title":"BMJ Open"},{"key":"2026010703453306000_15.12.e111474.29","doi-asserted-by":"publisher","DOI":"10.1016\/j.jclinepi.2017.01.013"},{"key":"2026010703453306000_15.12.e111474.30","doi-asserted-by":"crossref","first-page":"102145","DOI":"10.1016\/j.eclinm.2023.102145","article-title":"Forming a consensus opinion to inform long COVID support mechanisms and interventions: a modified Delphi approach","volume":"62","author":"Owen","year":"2023","journal-title":"eClinicalMedicine"},{"key":"2026010703453306000_15.12.e111474.31","doi-asserted-by":"crossref","unstructured":"Lobo CP , Pfalzgraf AR , Giannetti V , et al . Impact of invalidation and trust in physicians on health outcomes in fibromyalgia patients. Prim Care Companion CNS Disord; 2014. Available: https:\/\/www.psychiatrist.com\/pcc\/impact-invalidation-trust-physicians-health-outcomes","DOI":"10.4088\/PCC.14m01664"},{"key":"2026010703453306000_15.12.e111474.32","doi-asserted-by":"crossref","first-page":"620","DOI":"10.1111\/papr.13339","article-title":"Knowledge on cause, clinical manifestation and treatment for fibromyalgia among medical doctors: A worldwide survey","volume":"24","author":"Van Wilgen","year":"2024","journal-title":"Pain Pract"},{"key":"2026010703453306000_15.12.e111474.33","article-title":"Physicians\u2019 knowledge, attitudes, and practices regarding fibromyalgia: A systematic review and meta-analysis of cross-sectional studies","volume":"103","author":"Agarwal","year":"2024","journal-title":"Medicine (Abingdon)"},{"key":"2026010703453306000_15.12.e111474.34","doi-asserted-by":"crossref","first-page":"111485","DOI":"10.1016\/j.jclinepi.2024.111485","article-title":"Sample size in multistakeholder Delphi surveys: at what minimum sample size do replicability of results stabilize?","volume":"174","author":"Manyara","year":"2024","journal-title":"J Clin Epidemiol"},{"key":"2026010703453306000_15.12.e111474.35","unstructured":"Office of the Chief Science Advisor of Canada . Post-COVID-19 condition in Canada: what we know, what we don\u2019t know, and a framework for action. 2022. Available: https:\/\/science.gc.ca\/site\/science\/en\/office-chief-science-advisor\/initiatives-covid-19\/post-covid-19-condition-canada-what-we-know-what-we-dont-know-and-framework-action"}],"container-title":["BMJ Open"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/syndication.highwire.org\/content\/doi\/10.1136\/bmjopen-2025-111474","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,1,7]],"date-time":"2026-01-07T11:45:49Z","timestamp":1767786349000},"score":1,"resource":{"primary":{"URL":"https:\/\/bmjopen.bmj.com\/lookup\/doi\/10.1136\/bmjopen-2025-111474"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,12]]},"references-count":35,"journal-issue":{"issue":"12","published-online":{"date-parts":[[2025,12,3]]},"published-print":{"date-parts":[[2025,12]]}},"alternative-id":["10.1136\/bmjopen-2025-111474"],"URL":"https:\/\/doi.org\/10.1136\/bmjopen-2025-111474","relation":{},"ISSN":["2044-6055","2044-6055"],"issn-type":[{"value":"2044-6055","type":"print"},{"value":"2044-6055","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,12]]}}}