Sudden Cardiac Death
Sudden Cardiac Death Project
When someone dies suddenly, this can be due to a genetic cause, meaning relatives may also be at risk. Gold standard care is to recommend genetic testing on the loved-one who died and offer clinical screening to relatives. Genetic markers may be found during the testing of the person who died. If this is the case then family members can benefit from this additional screening test. Relatives who are diagnosed with one of these heart conditions can take advantage of treatment options and potentially saving further lives in the family.
What is sudden cardiac death?
Sudden cardiac death (SCD) is diagnosed when someone passes away unexpectedly. Coronary artery disease is the most common cause of SCD but after that, inherited heart conditions are the next most common cause. Inherited heart conditions are largely split into two main categories – structural (where the shape and size of the heart or major vessels are changed/altered), and electrical (the electrical system cannot be seen on post mortem so the heart looks “normal” and no other cause of death is found).
Inherited structural causes include:
- Hypertrophic cardiomyopathy
- Arrhythmogenic cardiomyopathy
- Dilated cardiomyopathy (with no other cause identified)
- Aortopathy – where the thoracic aorta bulges (aneurysm) and may dissect or rupture (burst)
- Severe mitral valve prolapse.
Inherited electrical causes are also known as sudden arrhythmic death syndrome (SADS) is an umbrella term for the inherited arrhythmias and include:
- long QT
- Brugada
- CPVT
How will this project make a difference?
By working together with the coronial service, we aim to identify families whose relative has died from an inherited heart condition. We would like to discuss with them the benefits of saving tissue on their loved-one who died (ideally, a small section of spleen) so we can arrange a genetic test. We also want to talk to families about clinical screening for themselves. This should be done at a specialist inherited cardiovascular conditions centre/hospital and depending on the condition, may include tests such as:
- ECG – this involves having stickers placed on your chest which are attached to a machine that measures the electrical signal in the heart
- Exercise tolerance test – this involves monitoring your heart (as with the ECG) while you walk/jog for about 10-15 minutes on a walking machine (treadmill) or bicycle machine.
- Echocardiogram – is an ultrasound scan of the heart and involves having a scanning-pen placed on your chest to look at the shape and function of your heart
- Holter monitor – is an ECG which you wear for a day
- MRI – is a scan which takes detailed pictures of your heart. It looks at the shape and function of the heart muscle and looks for any fat or scar in the muscle wall.
If we can offer these tests to all families affected by an inherited heart condition we have a better chance of making sure all relatives who also have the condition are offered treatments, lifestyle advice and careful monitoring to save lives.
If a relative does not have the condition, this can reassure relatives who might otherwise be very worried.
For patients
If your loved-one has been affected by sudden cardiac death (at any point, but particularly in the last few years) and you have any questions, please contact our nurse, Claire Kirkby (claire.kirkby@nhs.net).
For healthcare professionals
If you are a healthcare professional and you have any questions, or would like training about inherited heart conditions and sudden cardiac death, please contact Claire.