Evidence map›Paper›PMID 28971321›Full record

ArticleJournal of community genetics2018

Exploring approaches to facilitate family communication of genetic risk information after cystic fibrosis population carrier screening.

Anita Gorrie, Alison D Archibald, Liane Ioannou, Lisette Curnow, Belinda McClaren

Open access · bronzeAbstract read
In one paragraph

Article in Journal of community genetics, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.

0numbers the graph read from it
0cells of the map it votes in
8citing papers in PubMed
1.2field-weighted citation impact, top 19% 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

8 citing papers in PubMed, 12 citations in OpenAlex.

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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

5 authors at 3 institutions in 1 country.

Anita GorrieDepartment of Paediatrics, The University of Melbourne, Melbourne, VIC, Australia.
Alison D ArchibaldDepartment of Paediatrics, The University of Melbourne, Melbourne, VIC, Australia.
Liane IoannouMurdoch Children's Research Institute, The Royal Children's Hospital, Melbourne, VIC, Australia.
Lisette CurnowDepartment of Paediatrics, The University of Melbourne, Melbourne, VIC, Australia.
Belinda McClarenDepartment of Paediatrics, The University of Melbourne, Melbourne, VIC, Australia. belinda.mcclaren@mcri.edu.au.
Royal Children's Hospital · AUMurdoch Children's Research Institute · AUUniversity of Melbourne · AU

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Population carrier screening for cystic fibrosis (CF) enables individuals with no known family history of the condition to ascertain their risk of having a child with CF. When an individual is identified as a carrier of CF, a life-shortening condition, they are encouraged to inform their relatives who are at increased risk of being a carrier. Research suggests that the uptake of CF carrier testing amongst relatives of carriers or people with CF is low. This study aimed to explore approaches to facilitate the process of family communication of genetic information after an individual is identified as a carrier of CF through population screening. Five key informants were interviewed to inform the development of a telephone survey which was administered to 21 individuals identified as carriers of CF through population carrier screening at Victorian Clinical Genetics Services. This study suggests that providing carriers with additional information and follow-up support would be appreciated by carriers and could result in more accurate information being disseminated more widely within families, which could lead to more at-risk relatives accessing testing. Suggested strategies to enhance current practice include mailing a fact sheet to carriers and a follow-up telephone call provided by a genetic counsellor to carriers to offer further support in communicating this information to their relatives.

Indexed as

Cystic fibrosisFamily communicationGenetic counsellingPopulation carrier screening

Identifiers

PMID28971321
PMCPMC5752656
OpenAlexW2762987068

What OpenQuestion holds

Textmetadata
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.