PARTICIPANT UPDATE – Frequently Asked Questions

1 – What is data linkage?

data flow

The data that we collect from participants or their doctors  can be enhanced by linking to other national healthcare databases such as those held by NHS Digital (such as healthcare data from the Office for National Statistics). This means that we can be informed when health events happen that we might have not previously known about via participants or the hospitals.

The current BSRBR-RA participant information sheet has full details of what is involved in linking to other national healthcare databases.  If when you joined the register you signed version 8 of the consent form (dated 19/10/2016) or any subsequent version you will have already seen this information. However if you joined the study before this time, then you may want to read further details around this linkage.

You can see a copy of the information sheet HERE.

2 – What if I decide I don’t want to take part anymore?


Please remember that you are able to withdraw from the study at any time should you wish to do so and this will not affect your standard of care in any way.  Not every withdrawal needs to be complete, for example if you choose not to fill in forms yourself but have your rheumatology consultant continue to provide the study with information.  Again further details can be found on our website or by contacting us direct at the office.

For further details on the above see our Protecting Data Information page HERE.