Hernieuwd contact in de Klinische Genetica.
- Conditions
- recontact in clinical geneticsreclassificationactionable informationehealthwebapplicationPHR
- Registration Number
- NL-OMON22897
- Lead Sponsor
- niversity Medical Center GroningenHanzeplein 19713 GZ GroningenThe Netherlands
- Brief Summary
Is there a duty to recontact in light of new genetic technologies?: A systematic review of the literature Otten, E., Plantinga, M., Birnie, E., Verkerk, M. A., Lucassen, A. M., Ranchor, A. V. & Van Langen, I. M. Aug-2015 In : Genetics in Medicine. 17, 8, p. 668-678 11 p.<br> European Journal of Human Genetics<br> Recontacting patients in clinical genetics services: recommendations of the European Society of Human GeneticsManuscript:504-18-EJHG<br> European Journal of Human Genetics Title:Recontacting or not recontacting? A survey of current practices in clinical genetics centres in EuropeManuscript:798-17-EJHGR
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- Recruiting
- Sex
- Not specified
- Target Recruitment
- 300
(former) patient of the clinical genetics department of the University Medical Center Groningen (or possibly another Dutch department for clinical genetics, in case the trial becomes multicenter)
- (former) patient falls under one of the specified groups eligible for recontact (e.g. NF1 patients, reclassification patients)
- (former) patient opts out of receiving new information about his/ her genetic condition/result of past genetic testing or doesn't answer first message about the possibility of receiving new information.
- no access to a PC or tablet/ ipad with internet (however if this is the case, patients are asked to fill in the questionnaires (seperate cohort))
Study & Design
- Study Type
- Interventional
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method experience with the personal health record compared to standard care:<br /><br>- acceptability and usability ((adaptations of) the System Usability Scale, PWU, Webclic, VisAWI-s)<br /><br /><br><br>psychological impact of recontact via the online personal health record compared to standard care:<br /><br>- anxiety (STAI: 6 items)<br /><br>- worries (adaptation of the Cancer Worry Scale)<br /><br>- affect (adaptation of the PANAS)<br /><br>- trust in clinical genetics/ clinical geneticist Dutch version of the Wake Forest Physician Trust Scale
- Secondary Outcome Measures
Name Time Method experience with the information message:<br /><br>- content<br /><br>- construction<br /><br>- clarity<br /><br>understanding of the new information:<br /><br>- knowledge questions<br /><br>- risk perception<br /><br>pratical implications:<br /><br>- opting out of new information<br /><br>- requested follow-up with clinical genetics department<br /><br>- informing of medical professionals/ familymembers about the new information by patients