Hernieuwd contact in de Klinische Genetica.

INTERVENTION: The intervention studied is the receiving of new, layered actionable information about their genetic condition/ results of past genetic testing via a personal health record designed for this purpose, with the options of getting in contact with the former genetic counselor (or colleague) by email, telephone or in person if desired. We compare this intervention to our standard care; receiving new information about a patients genetic condition/ results of past genetic testing via a personal letter, with the same options for follow up contacts. CONDITION: E‐health, Clinical genetics, Personal health record (PHR) ; ; PRIMARY OUTCOME: experience with the personal health record compared to standard care:; ; ‐ acceptability and usability ((adaptations of) the System Usability Scale, PWU, Webclic, VisAWI‐s); ; ; ; psychological impact of recontact via the online personal health record compared to standard care:; ; ‐ anxiety (STAI: 6 items); ; ‐ worries (adaptation of the Cancer Worry Scale); ; ‐ affect (adaptation of the PANAS); ; ‐ trust in clinical genetics/ clinical geneticist Dutch version of the Wake Forest Physician Trust Scale SECONDARY OUTCOME: experience with the information message: ; ; ‐ content ; ; ‐ construction ; ; ‐ clarity ; ; understanding of the new information: ; ; ‐ knowledge questions ; ; ‐ risk perception ; ; pratical implications: ; ; ‐ opting out of new information ; ; ‐ requested follow‐up with clinical genetics department ; ; ‐ informing of medical professionals/ familymembers about the new information by patients INCLUSION CRITERIA: ‐ (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 >16 years or parents of a (former) patient <16 years ‐ (former) patient wishes to receive new information about his/ her genetic condition/result of past genetic testing ‐ access to a PC or tablet/ ipad with internet ‐ an e‐mailaddress ‐ mastery of the Dutch language ‐ written informed consent