What is a registry?
A registry record information about the health status and the treatments they receive. Clinical data registries typically focus on patients who share a common reason for needing healthcare.
How do registries help patients?
There are several registries that record details about patients who suffer from cardiogenic shock. Registries are used to provide information and evidence to:
- help doctors choose the best equipment for patients
help understand which patients benefit the treatments and monitoring we provide
help reduce the complications
give regular feedback to hospitals, doctors and manufacturers about their performance
What information is collected?
We send details about patients’:
- medical condition(s)
- treatments and monitoring and which equipment was used
- procedures that were performed whilst in hospital
- length of stay in intensive care and in hospital
- complications that occurred whilst in hospital
We also send details of the patients’ age, dates of birth and gender.
We do not send the patients’ names, addresses, postcodes or NHS numbers.
Is the information safe?
We currently collect data in a local registry at Barts Health. We also share data with registries in Europe and North America. All information is stored securely and anonymously on secure servers. This means it is very difficult to identify individuals. The use of patient data to support registries has been approved by the Caldicott Guardian at Barts Health NHS Trust. They are the person who is responsible for ensuring that all patient data are safe.
What information does the registry provide for patients?
The registries do not give out specific information to patients or members of the public. It is designed to help healthcare professionals learn more about patients with severe heart or lung failure requiring intensive care.
Who can use the data in the registry?
Data in the registry can be used for medical research. The purpose of this research is to improve our understanding about patients with cardiogenic shock. All requests to use the data must be approved by the relevant registry committee. The committee checks that the requests have ethical approval and that the data will remain safe. Any data shared will be the minimum amount possible and anonymised. They will not know which hospital submitted the information.