Knowledge * Registers

Registers

The society runs three registers. The first two are for adult patients receiving biological treatments for rheumatoid arthritis and ankylosing spondylitis, and the third is for young patients on juvenile idiopathic arthritis. The data collected from these registers generates vital evidence of long term patient safety and treatment efficacy.

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.

Rheumatoid arthritis

The register tracks the progress of patients with severe rheumatoid arthritis who are receiving various biologic agents in order to monitor the safety and effectiveness of these treatments over the long term.

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Ankylosing spondylitis

The register recruits patients with ankylosing spondylitis who are being prescribed particular biologics, as well as a control group of patients who have not been prescribed them.

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Juvenile idiopathic arthritis

This register collects detailed information on the effectiveness and safety of 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 set. However, there are some contractual limitations on how the data can be used. Requests to conduct research with the data follow a formal process.  The registers policy for third party data access, which you will find included in the application form, gives more detail and is essential reading if you intend to apply. 

If you plan to submit a data access request you must first discuss your requirements with Dr Kath Watson at Manchester to ensure that the rheumatoid arthritis register has the appropriate data. Only then should you complete the third party data request form and send it to the rheumatoid arthritis register team

Only then should you complete a 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 dates for 2017 are as follows:

Wednesday 10 May 2017 

Friday 13 October 2017 

Friday 22 December 2017

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.

Ankylosing Spondylitis

The dataset is limited but applications are still welcome. Before completing the request form you are strongly advised to discuss your requirements with Prof. Gary Macfarlane or Dr Gareth Jones in Aberdeen to ensure the register has the appropriate data. Requests to conduct research with the data follows the same process as above.