Genetic Information Service

The Genetic Information Service (GIS) can give you information and support about inherited heart and circulatory conditions.  

Our GIS cardiac nurses can also help you understand why you, or a family member, might need to be assessed at a specialist clinic. They may be able to support your referral to a clinic too. 

You can speak to one of our specially trained GIS nurses confidentially. 

How can the GIS help me?

If you or your family are suspected to have an inherited heart or circulatory condition it can feel worrying. You might have questions and concerns. Our GIS nurses can support you and help you understand your condition. 

The GIS team can also explain why you might need to be assessed at a specialist clinic. They can describe what you could expect to happen at the clinic and why. 

What is an inherited heart or circulatory condition?

Inherited conditions are caused by a fault (or mutation) in one or more of your genes. Our genes make up who we are, and we inherit them from our parents. Genes can pass on high-risk conditions from one or both parents to their child.   

Inherited conditions such as:

• hypertrophic cardiomyopathy (HCM),
• sudden arrhythmic death syndrome (SADS)
• familial hypercholesterolemia (FH).

An inherited heart or circulatory condition is different from having a family history of a condition, such as a heart attack or a stroke. 

Am I at high risk of developing an inherited condition?

You have a high risk of developing an inherited condition if:

• your healthcare team suspect you have a fault (or mutation) in one or more of your genes that could cause an inherited condition
• you are an immediate relative (parent, sibling or child) of someone who has:
  • been diagnosed with an inherited condition
  • a fault (or mutation) in a gene which could cause an inherited condition
  • suddenly died and the cause of death is suspected to be an inherited condition.

Why might I need to go to a specialist clinic?

It’s important for people with a high risk of developing an inherited heart or circulatory condition to be seen in a specialist genetics or inherited conditions clinic. They provide expert assessments to diagnose inherited conditions. The centre can also arrange treatment if necessary. This can help to save lives from undetected heart and circulatory diseases. 

Your local cardiology centre might not offer the same services as a specialist clinic. A cardiology centre can do tests at your local hospital to see how your heart or circulatory system are working, such as an ECG, MRI scan or an echocardiogram. But genetic testing and genetic counselling is only available at a specialist genetics centre. 

GIS may be able to help to arrange a referral to a specialist clinic for you. This is done by sending a letter to your GP.  

More information

For more information about inherited conditions, go to our webpages:

• Familial hypercholesterolaemia
• Sudden arrhythmic death syndrome
• Inherited heart rhythm disturbances
• Hypertrophic cardiomyopathy
• Dilated cardiomyopathy
• Arrhythmogenic right ventricular cardiomyopathy