Evidence map›Paper›PMID 35419494›Full record

ArticleWellcome open research2022

Promotion of data sharing needs more than an emergency: An analysis of trends across clinical trials registered on the International Clinical Trials Registry Platform.

Laura Merson, Duduzile Ndwandwe, Thobile Malinga, Giuseppe Paparella, Kwame Oneil, Ghassan Karam, Robert F Terry

Open access · goldAbstract read
In one paragraph

Article in Wellcome open research, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers.

0numbers the graph read from it
0cells of the map it votes in
10citing papers in PubMed
5.2field-weighted citation impact, top 4% of its field
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

10 citing papers in PubMed, 27 citations in OpenAlex.

  1. Article
  2. Article
  3. Review
  4. Intent to share individual participant data of Indian clinical trials.The Lancet regional health. Southeast Asia · 2023
    Article
  5. Rising pharmaceutical innovation in the Global South: a landscape study.Journal of pharmaceutical policy and practice · 2023
    Article
  6. The changing landscape of clinical trials in Australia.The Medical journal of Australia · 2023
    Article
  7. Review
  8. Review
  9. Article
  10. 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

7 authors at 6 institutions in 4 countries.

Laura MersonInfectious Diseases Data Observatory, University of Oxford, Oxford, OX3 7FZ, UK.ORCID https://orcid.org/0000-0002-4168-1960
Duduzile NdwandweCochrane South Africa, South African Medical Research Council, Cape Town, 7505, South Africa.ORCID https://orcid.org/0000-0001-7129-3865
Thobile MalingaCochrane South Africa, South African Medical Research Council, Cape Town, 7505, South Africa.ORCID https://orcid.org/0000-0001-5512-6696
Giuseppe PaparellaUniversity of Exeter, Exeter, EX4 4PY, UK.
Kwame OneilSierra Leone Ministry of Health and Sanitation, Freetown, Sierra Leone.
Ghassan KaramWorld Health Organisation, Geneva, Switzerland.
Robert F TerrySpecial Programme for Research and Training in Tropical Diseases (TDR), Geneva, Switzerland.ORCID https://orcid.org/0000-0003-3849-7705
South African Medical Research Council · ZASpecial Programme for Research and Training in Tropical DiseasesUniversity of Exeter · GBUniversity of Oxford · GBUniversity of Sierra Leone · SLWorld Health Organization · CH

Funding

Wellcome TrustWorld Health Organization 001
6 · The paper itself

Abstract

backgroundA growing body of evidence shows that sharing health research data with other researchers for secondary analyses can contribute to better health. This is especially important in the context of a public health emergency when stopping a pandemic depends on accelerating science.

methodsWe analysed the information on data sharing collected by the 18 clinical trial registries included in the WHO International Clinical Trials Registry Platform (ICTRP) to understand the reporting of data sharing plans and which studies were and were not planning to share data. Data on sponsor and funder organisations, country of recruitment, registry, and condition of study were standardised to compare the sharing of information and data across these facets. This represents the first ever comprehensive study of the complete data set contained in ICTRP.

resultsAcross 132,545 studies registered between January 2019 and December 2020, 11.2% of studies stated that individual patient data (IPD) would be shared. Plans to share IPD varied across the 18 contributing registries- information on data sharing was missing in >95% of study records across 7/18 registries. In the 26,851 (20.3%) studies that were funded or sponsored by a commercial entity, intention to share IPD was similar to those that were not (11.5% vs 11.2%). Intention to share IPD was most common in studies recruiting across both high-income and low- or middle-income countries (21.4%) and in those recruiting in Sub-Saharan Africa (50.3%). Studies of COVID-19 had similar levels of data sharing to studies of other non-pandemic diseases in 2020 (13.7% vs 11.7%).

conclusionsRates of planned IPD sharing vary between clinical trial registries and economic regions, and are similar whether commercial or non-commercial agencies are involved. Despite many calls to action, plans to share IPD have not increased significantly and remain below 14% for diseases causing public health emergencies.

Indexed as

clinical trial registration; ICTRPCOVID-19Data sharing; clinical trialshealth researchindividual patient datapublic health emergenciesSARS-CoV-2

Identifiers

PMID35419494
PMCPMC8980676
OpenAlexW4220795497

What OpenQuestion holds

Textmetadata
LicenceCC BY
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.