The data that we have already collected from our participants and their consultants can be enhanced by linking to other national databases such as NHS Digital – this means that we can be informed of some adverse events that we might have previously not known about for participants on our study.
For example, if one of the participants registered on our study develops a cancer, then we will be informed of that via a notification from the cancer register at NHS Digital. If a participant passes away, we will be informed via a notification from the deaths register at NHS Digital.
We do share some minimal identifiable information (including NHS number and date of birth) with NHS national databases/registers such as NHS Digital (see table below for full list) to allow us to match identifiable information already held to provide this additional healthcare data about study participants.
NHS National Databases currently providing additional healthcare data to the study:
|England||Malignancy / Mortality service||NHS Digital /Office for National Statistics|
|Wales||Malignancy / Mortality service||NHS Digital /Office for National Statistics|
|Scotland||Malignancy / Mortality service||NHSCR - NHS Central Register|
|Northern Ireland||Mortality Service||BSO - Business Services Organisation|
|Northern Ireland||Malignancy service||NICR - Northern Ireland Cancer Registry|
The importance of data linkage
If you are a participant in the BSRBR-RA, the data you have provided to us regarding your arthritis is extremely important and has led to many publications in medical journals (details of which can be found here).
Linking data as outlined above means that we can be informed about events of malignancy and mortality that we might have previously not known about for participants on our study.
If you have signed version 8 of the consent form dated 19/10/2016 (or any subsequent version of the consent form) then you will have full details of what is involved in linking to other national databases from the participant information sheet. If you joined the study before this time and signed an older version of the consent form then you may have further questions regarding this linkage, as the participant information sheet did not contain as much detail to explain what is involved.
To find out more about these changes please read the updated information sheet (version 8: 19/10/2016 or any subsequent version) - the current version can be found here, or you can request a copy from your rheumatology team or from the BSRBR-RA study team directly (0161 275 1652 / 0161 275 7390, firstname.lastname@example.org).
If you have any further questions about this please contact the BSRBR-RA team who will be happy to advise. 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.
We take data confidentiality seriously at the study. A link to further information on the guiding principles we use when handling and processing the data that we receive can be found below.