Evidence map›Paper›PMID 32186242›Full record

ArticlePalliative medicine2020

Ethical and research governance approval across Europe: Experiences from three European palliative care studies.

Nancy Preston, Johannes Jm van Delden, Francesca Ingravallo, Sean Hughes, Jeroen Hasselaar, Agnes van der Heide, Lieve Van den Block, Lesley Dunleavy, Marieke Groot, Agnes Csikos and 1 more

Abstract read
In one paragraph

Article in Palliative medicine, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
7citing papers in PubMed, 1 pooled it
–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

7 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Bioethics committee approvals in multicentre laryngology research across Europe: the European Laryngological Society's consensus on legal basis and quality assurance.European archives of oto-rhino-laryngology : official journal of the European Federation of Oto-Rhino-Laryngological Societies (EUFOS) : affiliated with the German Society for Oto-Rhino-Laryngology - Head and Neck Surgery · 2026
    Article
  3. Article
  4. Article
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  6. Review
  7. Review
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

11 authors.

Nancy PrestonInternational Observatory on End of Life Care, Lancaster University, Lancaster, UK.ORCID 0000-0003-2659-2342
Johannes Jm van DeldenUniversitair Medisch Centrum Utrecht, Utrecht, The Netherlands.
Francesca IngravalloUniversity of Bologna, Bologna, Italy.ORCID 0000-0002-5194-375X
Sean HughesInternational Observatory on End of Life Care, Lancaster University, Lancaster, UK.
Jeroen HasselaarRadboud University, Nijmegen, The Netherlands.
Agnes van der HeideErasmus MC, Rotterdam, The Netherlands.
Lieve Van den BlockVUB-UGhent End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB), Brussels, Belgium.
Lesley DunleavyInternational Observatory on End of Life Care, Lancaster University, Lancaster, UK.
Marieke GrootRadboud University, Nijmegen, The Netherlands.
Agnes CsikosInstitute of Primary Care, University of Pécs Medical School, Pécs, Hungary.
Sheila PayneInternational Observatory on End of Life Care, Lancaster University, Lancaster, UK.ORCID 0000-0001-6982-9181

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundResearch requires high-quality ethical and governance scrutiny and approval. However, when research is conducted across different countries, this can cause challenges due to the differing ethico-legal framework requirements of ethical boards. There is no specific guidance for research which does not involve non-medicinal products.

aimTo describe and address differences in ethical and research governance procedures applied by research ethics committees for non-pharmaceutical palliative care studies including adult participants in collaborative European studies.

designAn online survey analysed using descriptive statistics. SETTING/

participantsEighteen principal investigators in 11 countries conducting one of three European-funded studies.

resultsThere was variation in practice including whether ethical approval was required. The time to gain full approvals differed with the United Kingdom having governance procedures that took the longest time. Written consent was not required in all countries nor were data safety monitoring committees for trials. There were additional differences in relation to other data management issues.

conclusionResearchers need to take the differences in research approval procedures into account when planning studies. Future research is needed to establish European-wide recommendations for policy and practice that dovetail ethical procedures and enhance transnational research collaborations.

Indexed as

Clinical Studies as TopicEthics Committees, ResearchPalliative CareEuropeHumansQuality of LifeTime FactorsUnited Kingdomclinical trial as topicEthicsEuropepalliative careresearch governancesurveys and questionnaires

Identifiers

PMID32186242
PMCPMC7521003

What Socratic 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 Socratic graph.