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