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?

withdraw1

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.

Advertisements

Centre of the Month

These little bears have recently taken up temporary residence in our offices.  Can your recruitment impress us enough to get one a new home on your desk?  Keep sending us those registrations and we hope to be announcing bear winners soon.

Recent Centre of the Month winners:

September:

Biosimilar & Total recruitment – Ipswich Hospital NHS Trust

Cimzia recruitment – Cannock Chase Hospital

October:

Biosimilar & Total recruitment – Nottingham University Hospital NHS Trust (QMC)

Anti-TNF recruitment – Royal Free Hospital

Cimzia recruitment – Kings College Hospital

Keep up the good work and remember to keep an eye out for announcements regarding new therapies joining the register soon!

Research News: ACR Annual Meeting

ACR 2017

Are you lucky enough to be leaving the chilly UK and heading to the ACR/ARHP Annual Meeting in sunny San Diego?  Our researchers have poster presentations on “Long-Term Risk of Serious Infections in Patients with Rheumatoid Arthritis Treated with Rituximab” (abstract 547) & “Refractory Disease in Rheumatoid Arthritis” (abstract 141) in ACR Poster Session A (Sun 5th, 9-11 am).  And “Switching from RA Originator to Biosimilar in Routine Clinical Care” (abstract 2439) in ACR Poster Session C (Tue 7th, 9-11 am).  Check them out if you are there.

JUN 2017 – Centres of the Month

Well done to Northwick Park Hospital who have bagged the top recruitment all round for this month.  They registered the most participants total including biosimilars!  Can your centre beat them next month?  Don’t forget to keep up to date with who we are recruiting and remember that re-registrations count too.

This slideshow requires JavaScript.