Creating a database of clinical information on sudden cardiac arrest

The EndUCD project registry will collect existing clinical information from participating institutions.

The information collected will provide an important resource for medical researchers investigating the causes and possible treatments for sudden cardiac arrest.

It will also help doctors and nurses provide the best possible care to individuals and families affected by this condition.

Information about those patients who experience out-of-hospital cardiac arrest or their relatives will be forwarded to the registry team by clinical care providers.

What information is being collected?

For all individuals we will record:

• name, age and physical characteristics (such as ethnicity, height, weight and gender)
• any relevant medical history (including any previous history of cardiac disease)
• the results of our genetic testing (if performed)
• details of genetic counselling provided.

For survivors of cardiac arrest we will also record:

• time and details of the cardiac arrest
• post-arrest cardiac assessments performed and interventions recommended, and any complications of the illness or treatment
• family structure.

For genetic family members of cardiac arrest cases we will also record:

• Cardiac assessments performed and interventions recommended, and any complications of the illness or treatment.

Information collected is stored on a secure server and will only be used in a de-identified (anonymous) format for research purposes.