How is information collected about me in AMALFI?
- Potential participants for AMALFI were identified by their GP Practice and sent an invitation pack, which included a brief questionnaire.
- Those who were interested in taking part, completed the questionnaire, which contained personal details, such as their NHS number, contact details and eight medical questions, such as, ‘Have you had a heart attack?’, with yes/no answers. This questionnaire was returned to the study coordinating centre in Oxford. It contained the only data that the study team had about participants at the beginning of the study.
- After you decided to take part, the co-ordinating centre in Oxford requested further information from your GP. It will also request information from NHS Digital. NHS Digital is a branch of the NHS that uses the nation's health data to drive research and transform services to help people get the best care. To get this information, the AMALFI team will send your name, date of birth, NHS number and postcode to NHS Digital, who can link this information to individual participants in the study.
- NHS Digital then provides us with information about any admissions to hospital, outpatient and A&E visits, as well as information from primary care records and medications, and information about people who may have passed away, in order that the study does not make contact and cause any distress to relatives. This information includes date and cause of death. Please note, that you can contact the study team at any time to withdraw your permission for the study to get this information from your GP or NHS Digital.
- We will also ask you to complete a questionnaire (EQ5D) which aims to collect information about quality of life. We will do this either via the post or online at two time points: when recruitment to the study is completed, and approximately two and a half years after that.
You are free to withdraw from taking part in the AMALFI study at any stage. If you decide you no longer wish to continue, you can contact the study team, let us know that you have changed your mind, and we will remove your details from our contact list. You do not have to tell us the reason why.