ECHOES-Survive continues to link the information provided by participants at study visits with NHS Digital and civil registration data to report the survival rates, and cause of death, for the whole ECHOES cohort. This work will determine how long people live for following a diagnosis of heart failure, and whether they die from heart-related problems or something else, to help doctors and patients understand more about the condition.
A minimum amount of identifiable data (name, date of birth, NHS number) from ECHOES participants is shared with NHS Digital by the University of Birmingham to carry out the linkage between the study data and civil registration data. The common law duty of confidentiality is met by participants giving consent to participate in the ECHOES study. NHS Digital provides date and cause of death directly to the study team. As soon as the date and cause of death is linked with the participants study information, any data that could be used to directly identify individuals (name, date of birth, NHS number) is removed. The data will be stored for the duration of the ECHOES-Survive study. The current end date for the study is 31st March 2019 but the study may extend beyond this date if further funding is secured.
If you are an ECHOES participant, you are free to withdraw your consent for data linkage with NHS Digital at any time, simply contact us at the details below.