British Society for Rheumatology > Knowledge > Registers

Registers

Knowledge * Registers

The society runs fours biologics and biosimilars registers. Three are for adult patients receiving treatments for rheumatoid arthritis, ankylosing spondylitis and psoriatic arthritis, and the fourth is for young patients with juvenile idiopathic arthritis. The data collected from these registers generates vital evidence on patient safety in the long term as well as the efficacy of treatment.

We are keen to promote the use of data from the registers by other researchers who are not part of the core academic teams. They can apply for access to some of the data to enable important additional research and analysis.

To access published papers relating to the registers, please click here 

Our four registers:

Rheumatoid arthritis register

5 new drugs being recruited for

This register is run by an expert team based in the Arthritis Research UK Epidemiology Unit at the University of Manchester.

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Ankylosing spondylitis register

This register has now stopped recruiting but you can still access data from it for your own research. Find out more at the bottom of this page.

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Psoriatic Arthritis register

We are pleased to announce the launch of the Psoriatic Arthritis register. Preparatory work for this register is underway and recruitment will open in May 2018.

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Juvenile idiopathic arthritis register

This register collects detailed information on the effectiveness and safety of treatments for children with juvenile idiopathic arthritis.

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Requesting Registers data for your own research

We encourage external parties to access and analyse the rich registers data sets. There are contractual limitations on how the data can be used. Requests to conduct research with the RA and AS registers data follow a formal process.  The Registers' policy for third party data access,  included in the 3rd Party Data Request  Form, gives more detail. 

If you intend to apply, you must read the terms and conditions for data use and application form first before you approach the academic team in Manchester who have the RA register data or the Aberdeen team who have the AS register data. 

Requesting data from the Rheumatoid Arthritis Biologics Register 

Once you have read the policy and document form you should discuss your requirements with Dr Kath Watson to establish that the RA Register has the data you hope to analyse. Only then should you go ahead and complete the third party data request form and send it to the registers team

Any application will be discussed by the Registers' Steering Committee and, if approved, data will subsequently be released.

There are three deadlines within any year which will link to the Committee meetings where access decisions are taken. The  remaining dates for 2017 are:

Monday 21 May 2018

Monday 15 October 2018

Monday 07 January 2019

Be aware that the length of time from request to approval and finally to supply of data can be as long as six months, depending on the complexity or size of the request. 

If you wish to submit a grant application partially or totally based on the use of registers data then you should discuss this with the Manchester team before submitting the grant application. The Chair can permit the inclusion of rheumatoid arthritis register data on a proposal at their discretion, but if the grant application is successful then a full proposal must be approved by the Registers' Steering committee before access is granted.

Requesting data from the Ankylosing Spondylitis Biologics Register

As above, you should read the 3rd Party Data Access Policy and the application form and then discuss your requirements with Prof. Gary Macfarlane or Dr Gareth Jones in Aberdeen to ensure the AS register has the appropriate data. Only then should you fill in the form. Requests to conduct research with the data follows the same process as above.

Requesting data on paediatric patients

If your interest is access to data from the Enbrel registry which collects detailed information on the effectiveness and safety of Enbrel in children with Juvenile Idiopathic Arthritis (either for independent data access or to work in collaboration with the team in Manchester,) please contact Prof. Kimme Hyrich in the first instance