Evidence map›Paper›PMID 26890453›Full record

ArticleGenetics in medicine : official journal of the American College of Medical Genetics2016

Recontact in clinical practice: a survey of clinical genetics services in the United Kingdom.

Daniele Carrieri, Anneke M Lucassen, Angus J Clarke, Sandi Dheensa, Shane Doheny, Peter D Turnpenny, Susan E Kelly

Abstract read
In one paragraph

Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 26 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
26citing 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

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

  1. Guideline
  2. Trial
  3. Review
  4. Article
  5. Article
  6. Article
  7. Article
  8. Review
  9. Article
  10. Article
  11. Recontacting registry participants with genetic updates through GenomeConnect, the ClinGen patient registry.Genetics in medicine : official journal of the American College of Medical Genetics · 2021
    Article
  12. Article
  13. Is there a duty to reinterpret genetic data? The ethical dimensions.Genetics in medicine : official journal of the American College of Medical Genetics · 2020
    Article
  14. Review
  15. Article
  16. Article
  17. Consent and Autonomy in the Genomics Era.Current genetic medicine reports · 2019
    Review
  18. Article
  19. Article
  20. Reinterpretation of sequence variants: one diagnostic laboratory's experience, and the need for standard guidelines.Genetics in medicine : official journal of the American College of Medical Genetics · 2018
    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.

Daniele CarrieriEgenis, University of Exeter, Exeter, UK.ORCID 0000-0002-3143-8430
Anneke M LucassenFaculty of Medicine, University of Southampton, Southampton, UK.ORCID 0000-0003-3324-4338
Angus J ClarkeSchool of Medicine, University of Cardiff, Cardiff, UK.ORCID 0000-0002-1200-9286
Sandi DheensaFaculty of Medicine, University of Southampton, Southampton, UK.
Shane DohenySchool of Medicine, University of Cardiff, Cardiff, UK.
Peter D TurnpennyRoyal, Devon, and Exeter Hospital, Exeter, UK.
Susan E KellyEgenis, University of Exeter, Exeter, UK.ORCID 0000-0003-1045-4615

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

purposeTo ascertain whether and how recontacting occurs in the United Kingdom.

methodA Web-based survey was administered online between October 2014 and July 2015. A link to the survey was circulated via an e-mail invitation to the clinical leads of the United Kingdom's 23 clinical genetics services, with follow-up with senior clinical genetics staff.

resultsThe majority of UK services reported that they recontact patients and their family members. However, recontacting generally occurs in an ad hoc fashion when an unplanned event causes clinicians to review a file (a "trigger"). There are no standardized recontacting practices in the United Kingdom. More than half of the services were unsure whether formalized recontacting systems should be implemented. Some suggested greater patient involvement in the process of recontacting.

conclusionThis research suggests that a thorough evaluation of the efficacy and sustainability of potential recontacting systems within the National Health Service would be necessary before deciding whether and how to implement such a service or to create guidelines on best-practice models.Genet Med 18 9, 876-881.

Indexed as

Duty to RecontactGenetics, MedicalHealth ServicesHumansSurveys and QuestionnairesUnited KingdomWorkforce

Identifiers

PMID26890453
PMCPMC5052431

What OpenQuestion holds

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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.