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Recontact in clinical practice: a survey of clinical genetics services in the United Kingdom
PURPOSE: To ascertain whether and how recontacting occurs in the United Kingdom. Genet Med 18 9, 876–881. METHOD: A 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...
Autores principales: | , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Nature Publishing Group
2016
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5052431/ https://www.ncbi.nlm.nih.gov/pubmed/26890453 http://dx.doi.org/10.1038/gim.2015.194 |
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author | Carrieri, Daniele Lucassen, Anneke M. Clarke, Angus J. Dheensa, Sandi Doheny, Shane Turnpenny, Peter D. Kelly, Susan E. |
author_facet | Carrieri, Daniele Lucassen, Anneke M. Clarke, Angus J. Dheensa, Sandi Doheny, Shane Turnpenny, Peter D. Kelly, Susan E. |
author_sort | Carrieri, Daniele |
collection | PubMed |
description | PURPOSE: To ascertain whether and how recontacting occurs in the United Kingdom. Genet Med 18 9, 876–881. METHOD: A 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. Genet Med 18 9, 876–881. RESULTS: The 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. Genet Med 18 9, 876–881. CONCLUSION: This 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. |
format | Online Article Text |
id | pubmed-5052431 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2016 |
publisher | Nature Publishing Group |
record_format | MEDLINE/PubMed |
spelling | pubmed-50524312016-10-21 Recontact in clinical practice: a survey of clinical genetics services in the United Kingdom Carrieri, Daniele Lucassen, Anneke M. Clarke, Angus J. Dheensa, Sandi Doheny, Shane Turnpenny, Peter D. Kelly, Susan E. Genet Med Original Research Article PURPOSE: To ascertain whether and how recontacting occurs in the United Kingdom. Genet Med 18 9, 876–881. METHOD: A 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. Genet Med 18 9, 876–881. RESULTS: The 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. Genet Med 18 9, 876–881. CONCLUSION: This 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. Nature Publishing Group 2016-09 2016-02-18 /pmc/articles/PMC5052431/ /pubmed/26890453 http://dx.doi.org/10.1038/gim.2015.194 Text en Copyright © 2016 Official journal of the American College of Medical Genetics and Genomics http://creativecommons.org/licenses/by/4.0/ This work is licensed under a Creative Commons Attribution 4.0 International License. The images or other third party material in this article are included in the article's Creative Commons license, unless indicated otherwise in the credit line; if the material is not included under the Creative Commons license, users will need to obtain permission from the license holder to reproduce the material. To view a copy of this license, visit http://creativecommons.org/licenses/by/4.0/ |
spellingShingle | Original Research Article Carrieri, Daniele Lucassen, Anneke M. Clarke, Angus J. Dheensa, Sandi Doheny, Shane Turnpenny, Peter D. Kelly, Susan E. Recontact in clinical practice: a survey of clinical genetics services in the United Kingdom |
title | Recontact in clinical practice: a survey of clinical genetics services in the United Kingdom |
title_full | Recontact in clinical practice: a survey of clinical genetics services in the United Kingdom |
title_fullStr | Recontact in clinical practice: a survey of clinical genetics services in the United Kingdom |
title_full_unstemmed | Recontact in clinical practice: a survey of clinical genetics services in the United Kingdom |
title_short | Recontact in clinical practice: a survey of clinical genetics services in the United Kingdom |
title_sort | recontact in clinical practice: a survey of clinical genetics services in the united kingdom |
topic | Original Research Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5052431/ https://www.ncbi.nlm.nih.gov/pubmed/26890453 http://dx.doi.org/10.1038/gim.2015.194 |
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