NL-OMON27057招募中不适用

Evaluation of a tailored approach towards informing family members at risk of inherited cardiac diseases: a randomized clinical trial

Academic Medical Center, University Medical Center Groningen & University Medical Center Utrecht0 个研究点目标入组 425 人开始时间: 待定最近更新: 2024年2月28日

适应症

试验速览

暂无简介。

•The study population consists of:
•(1) Index patients with an inherited cardiac disease and a putative pathogenic mutation (i.e., class 4 or 5 mutation): (a) Index patients who are the first in their family to attend pre-test genetic counselling about genetic testing for inherited cardiac diseases, (b) Index patients that have at least one alive adult family member at risk of inheriting the mutation, (c) Index patients who are aged 18 years or older, (d) Index patients who are able to read and write Dutch. For final enrolment: Index patients who have a putative pathogenic mutation detected at the DNA test.
•(2) Their first-degree, and second-degree family members in case of a deceased connecting first-degree family member that is affected or suspected to be affected (in case of sudden cardiac death), who are supposed to have a 50% risk of inheriting the disease-causing mutation. (a) Family members who are aged 18 years and older, (b) Family members who are able to read and write Dutch.

•(1) Index patients and family members who have cognitive functioning problems and therefore are not able to provide informed consent.

发起方

Academic Medical Center, University Medical Center Groningen & University Medical Center Utrecht