If you go into hospital with COVID-19 you may be asked to join a research study. If you cannot give consent yourself — for example, because you are being helped to breathe by a machine — then your relatives, with the nurses and doctors, can arrange consent for you.
Your consent process will be easier if you and your relatives have thought about this possibility and the hospital knows that.
Our card was originally available only in English but in several download formats. That version is still available HERE.
The important wording on the card has not changed.
Print it. Cut it out.
Answer the questions YES or NO. Sign it.
Carry it with you everywhere.
TrialsConnect has had the help of some other patients, research volunteers, and their friends to produce a card that you can carry. So everyone can immediately know that you are happy to be asked to join certain types of trial or not.
Carrying this card does NOT give automatic consent to joining any study. You or a relative will always have to give ‘informed consent’ after having any trial details explained. It does make that process easier for your doctors and relatives from the start.
There are two main types of COVID-19 research:
Observational Studies do not affect your normal treatment in any way. They record information about your treatment and the outcome. This usually comes from your medical notes and will not contain any information that identifies you. They might also use information from the blood and other samples that have been taken in the normal course of your treatment. The extra would otherwise be thrown away. You may sometimes be asked for further extra samples. This information from testing samples might include DNA/gene information (genetic fingerprint) but always without your name or identity.
Intervention Studies test new medicines or other treatments. You might be asked to test new treatment(s) to see if they work for you and patients in the future. Usually the researchers will decide by chance whether you will be taking the new treatment or just the normal treatment (called the ‘placebo’). This is so that the results can be compared properly. Your doctor, or a research doctor, or a nurse will carefully explain what is expected and what any risks might be before you decide to consent to a particular trial.
All TrialsConnect COVID-19 resource material available for download has been produced by patients and friends. We particularly thank Mark and Frankie Winter who have produced our COVID-19 graphics and Michael Gills who designed and donated the typeface Rahere (named in honour of the monk who founded St Bartholemews Hospital).