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How to Help?

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Research

There is still a lot we don't know about SADS and the inherited cardiac diseases. Worldwide, research into these conditions is ongoing, and we keep in touch with other centres where screening is also performed. Genetic testing is also improving all the time, and even if you were screened previously, advances may have been made in the interim, which might improve your care.

Here at the Heart House, we are taking a proactive stance on SADS. Researchers here are establishing the Sudden Cardiac death Registry, a project aimed at identifying and counting deaths from SADS in the Republic of Ireland. We are also undertaking a study to evaluate our screening service, and all patients who have previously attended or are coming to attend the Heart House are being invited to participate. The information leaflet for this study can be seen here (add link). The more people who participate in the study, the more information we will be able to collect on the causes of SADS.

Finally, we are commencing a "biocollection", where family screening patients have the option to give us a blood sample for banking. This will allow us perform research genetic tests, and even to perform focussed genetic tests for individuals if necessary. However, formal diagnostic testing will continue to be performed with our colleagues in the National Centre for Medical Genetics