Evidence map›Paper›PMID 39609006›Full record

ArticleBMJ open2024

Development of a minimum data set for long COVID: a Delphi study protocol.

Adelaide Amah, Pawan Kumar, Hammed Ejalonibu, Bansari Chavda, Alaa Aburub, Renee Greene, Daphne Kemp, Donna Ellen Frederick, Kathrina Mazurik, Long COVID Web and 3 more

Abstract read
In one paragraph

Article in BMJ open, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing 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

1 citing paper in PubMed.

  1. Article
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

13 authors.

Adelaide AmahResearch Department, Saskatchewan Health Authority, Saskatoon, Saskatchewan, Canada.ORCID http://orcid.org/0000-0001-7015-1419
Pawan KumarSaskatchewan Centre for Patient-Oriented Research, University of Saskatchewan, Saskatoon, Saskatchewan, Canada.
Hammed EjalonibuSaskatchewan Centre for Patient-Oriented Research, University of Saskatchewan, Saskatoon, Saskatchewan, Canada.
Bansari ChavdaDepartment of Community Health and Epidemiology, University of Saskatchewan, Saskatoon, Saskatchewan, Canada.
Alaa AburubSaskatchewan Centre for Patient-Oriented Research, University of Saskatchewan, Saskatoon, Saskatchewan, Canada.
Renee GreeneSaskatchewan Centre for Patient-Oriented Research, University of Saskatchewan, Saskatoon, Saskatchewan, Canada.
Daphne KempSaskatchewan Centre for Patient-Oriented Research, University of Saskatchewan, Saskatoon, Saskatchewan, Canada.
Donna Ellen FrederickSaskatchewan Centre for Patient-Oriented Research, University of Saskatchewan, Saskatoon, Saskatchewan, Canada.
Kathrina MazurikSaskatchewan Centre for Patient-Oriented Research, University of Saskatchewan, Saskatoon, Saskatchewan, Canada.ORCID http://orcid.org/0000-0001-6825-6756
Long COVID Web
Sarah SlagermanGeorge & Fay Yee Centre for Healthcare Innovation, University of Manitoba, Winnipeg, Manitoba, Canada.
Donna Ioana DumitrescuSaskatchewan Centre for Patient-Oriented Research, University of Saskatchewan, Saskatoon, Saskatchewan, Canada.ORCID http://orcid.org/0009-0000-2134-4310
Gary GrootDepartment of Community Health and Epidemiology, University of Saskatchewan, Saskatoon, Saskatchewan, Canada gary.groot@usask.ca.ORCID http://orcid.org/0000-0002-8307-5125

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

introductionPrevious consensus-based long COVID research has focused on establishing research priorities, developing clinical definitions, core outcomes and a list of recommendations of patient-reported outcome measures that can be used to assess and characterise long COVID. Complementing and extending this work, the proposed study will bring together diverse knowledge users to prioritise concepts of care, quality of life and symptoms to inform a national patient registry on long COVID. METHODS AND ANALYSIS: We will conduct a Delphi process involving Canadians with lived experiences and/or professional expertise with long COVID (including clinicians, policymakers, caregivers and community leaders). A pool of long COVID survey questions has been established through an environmental scan; these questions were coded by topic and will be presented via a series of online, anonymous survey questionnaires to a diverse cohort of 100 participants. Over the course of three Delphi rounds, participants will prioritise and recommend topics related to care, quality of life and symptoms. We will use the prioritised topics to develop a list of core questions as a minimum data set to standardise data collection and inform a national patient registry on long COVID in Canada. ETHICS AND DISSEMINATION: This study has been approved by the University of Saskatchewan Behavioural Research Ethics Board (BEH #4296). Findings will be shared at national conferences and will be published in an open-access peer-reviewed journal. In addition, the minimum data set will be shared with key knowledge users as recommendations to inform a national long COVID patient registry.

Indexed as

COVID-19Delphi TechniqueQuality of LifeCanadaConsensusHumansPost-Acute COVID-19 SyndromeResearch DesignSARS-CoV-2Surveys and QuestionnairesPost-Acute COVID-19 SyndromeREGISTRIESResearch DesignSARS-CoV-2 Infection

Identifiers

PMID39609006
PMCPMC11603833

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.