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ABSTRACT: Purpose
To ascertain whether and how recontacting occurs in the United Kingdom.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.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.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.
SUBMITTER: Carrieri D
PROVIDER: S-EPMC5052431 | biostudies-literature | 2016 Sep
REPOSITORIES: biostudies-literature
Genetics in medicine : official journal of the American College of Medical Genetics 20160218 9
<h4>Purpose</h4>To ascertain whether and how recontacting occurs in the United Kingdom.<h4>Method</h4>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.<h4>Results</h4>The majority of UK services reported that they recontact patients and their family members. However, recontacting ...[more]