Evidence map›Paper›PMID 41338651›Full record

ArticleBMJ open2025

Developing a minimum dataset for a national patient registry on Long COVID in Canada: a Delphi consensus-based study.

Kathrina Mazurik, Adelaide Amah, Donna Ioana Dumitrescu, Hammed Ejalonibu, Bansari Chavda, Daphne Kemp, Donna Ellen Frederick, Cindy Mclean, Simon Décary, Andrea Gruneir and 5 more

Abstract readConsensus Statement
PubMed Full text at PMC Publisher
In one paragraph

Article in BMJ open, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

15 authors.

Kathrina MazurikUniversity of Saskatchewan, Saskatoon, Saskatchewan, Canada kathrina.mazurik@usask.ca.ORCID http://orcid.org/0000-0001-6825-6756
Adelaide AmahResearch, Saskatchewan Health Authority, Saskatoon, Saskatchewan, Canada.ORCID http://orcid.org/0000-0001-7015-1419
Donna Ioana DumitrescuUniversity of Saskatchewan, Saskatoon, Saskatchewan, Canada.ORCID http://orcid.org/0009-0000-2134-4310
Hammed EjalonibuUniversity of Saskatchewan, Saskatoon, Saskatchewan, Canada.
Bansari ChavdaCommunity Health & Epidemiology, University of Saskatchewan College of Medicine, Saskatoon, Saskatchewan, Canada.
Daphne KempUniversity of Saskatchewan, Saskatoon, Saskatchewan, Canada.
Donna Ellen FrederickPatient partner, Saskatoon, Saskatchewan, Canada.
Cindy McleanPatient partner, Saskatoon, Saskatchewan, Canada.
Simon DécaryUniversity of Sherbrooke, Sherbrooke, Quebec, Canada.
Andrea GruneirDepartment of Family Medicine, University of Alberta, Edmonton, Alberta, Canada.ORCID http://orcid.org/0000-0002-1972-6253
Gayle HalasRady Faculty of Health Sciences, University of Manitoba, Winnipeg, Manitoba, Canada.ORCID http://orcid.org/0000-0003-0433-0632
Alison HoensDepartment of Physical Therapy, The University of British Columbia Faculty of Medicine, Vancouver, British Columbia, Canada.
Michelle KhoSchool of Rehabilitation Science, McMaster University, Hamilton, Ontario, Canada.ORCID http://orcid.org/0000-0003-3170-031X
Long COVID Web
Gary GrootCommunity Health and Epidemiology, University of Saskatchewan, Saskatoon, Saskatchewan, Canada.ORCID http://orcid.org/0000-0002-8307-5125

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectivesTo develop survey items for a national patient registry on Long COVID using a modified Delphi process.

designThis 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.

settingThis study focused on healthcare systems in Canada and was conducted online.

participantsA 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.

resultsIn 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.

conclusionsThe 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.

Indexed as

COVID-19Datasets as TopicRegistriesCanadaDelphi TechniqueHumansPost-Acute COVID-19 SyndromeQuality of LifeSARS-CoV-2Surveys and QuestionnairesDelphi TechniquePost-Acute COVID-19 SyndromeREGISTRIESResearch DesignSARS-CoV-2 Infection

Identifiers

PMID41338651
PMCPMC12682166

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.