Evidence map›Paper›PMID 31210971›Full record

ReviewEFORT open reviews2019

Registry stakeholders.

Anne Lübbeke, Andrew J Carr, Pierre Hoffmeyer

Abstract readReview
PubMed Full text at PMC Publisher
In one paragraph

Review in EFORT open reviews, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers, 3 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
14citing papers in PubMed, 3 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

14 citing papers in PubMed, 3 syntheses or guidelines pooled it.

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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

3 authors.

Anne LübbekeDivision of Orthopaedic Surgery and Traumatology, Geneva University Hospitals and University of Geneva, Switzerland.
Andrew J CarrNuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford, UK.
Pierre HoffmeyerDivision of Orthopaedic Surgery and Traumatology, Geneva University Hospitals and University of Geneva, Switzerland.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Clinical registries are health information systems, which have the mission to collect multidimensional real-world data over the long term, and to generate relevant information and actionable knowledge to address current serious healthcare problems.This article provides an overview of clinical registries and their relevant stakeholders, focussing on registry structure and functioning, each stakeholder's specific interests, and on their involvement in the registry's information input and output.Stakeholders of clinical registries include the patients, healthcare providers (professionals and facilities), financiers (government, insurance companies), public health and regulatory agencies, industry, the research community and the media.The article discusses (1) challenges in stakeholder interaction and how to strengthen the central role of the patient, (2) the importance of adding cost reporting to enable informed value choices, and (3) the need for proof of clinical and public health utility of registries.In its best form, a registry is a mission-driven, independent stakeholder-registry team collaboration that enables rapid, transparent and open-access knowledge generation and dissemination. Cite this article:

Indexed as

health information systemregistrystakeholder

Identifiers

PMID31210971
PMCPMC6549107

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.