Hernieuwd contact in de Klinische Genetica.

Genetic knowledge is expanding rapidly, due to technical advances, the increasingly broader scope of diagnostic testing in genetics and datasharing.

This leads to reclassifications of genetic test results and advancing insights about genetic conditions and recommendations for screening/ treatment with preventive options/health gains. Both clinicians and patients feel that it is important to recontact patients about clinically relevant new genetic information.

However, a systematic review by E. Otten has shown that there are many practical barriers hindering recontact.

E-health could be a possible solution to many of the practical difficulties. We have developed a personal health record that can be used for communication between patient and clinical geneticist (and other health care professionals/ caregivers etc).

In this trial we study if this personal health record is an acceptable, patient friendly and efficient method of recontacting. We compare recontact using this tool with our current standard of care, recontact by a personal letter.

A personal health record (PHR)* is a practical, responsible and patient friendly tool to assist in the proces of recontacting in clinical genetics.



* PGO in Dutch. In English I've used the term PHR or the broader term webapplication.

T0: patient receives a letter stating that there is new information about their genetic condition/ past genetic testing . Patient is given the oportunity to opt-out from receiving new information and is asked to participate in the trial (before randomization). First questionnaire is enclosed.

T1: after receiving the new information via personal health record (intervention) or personal letter (control). Patients receive an invitation to an online questionnaire or a paper version of the questionnaire (if preferred by patient)

T2: 2-3 months after T0 or after follow up contact with the clinical genetics department UMCG. Patients have the option to request follow up contact with the clinical genetics department about the new information.

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.