Requesting data from:
We encourage external parties to access and analyse the rich BSRBR-RA 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. See the BSRBR Policy for third party data access for more details.
If you plan to submit a data access request you must first discuss your requirements with Kimme Hyrich or Kath Watson to ensure that the BSRBR-RA register has the appropriate data.
Only then should you complete a third party data request form and email it to the Registers team.
It 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 BSRBR data then you should discuss this with the BSRBR before submitting the grant application. The Chair can permit the inclusion of BSRBR-RA 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.
The Ankylosing Spondylitis dataset is limited but applications are still welcome. Before completing the request form you are strongly advised to discuss your requirements with Gary Macfarlane or Gareth Jones to ensure that AS register has the appropriate data. Requests to conduct research with the data follow a formal process as detailed above.
The Registers Steering Committee is offering a small Bursary for access to BSRBR-RA data as a member benefit. The Bursary means the usual nominal cost of £600 (£500 + VAT) for data access by BSR members is waived. This Bursary is open to all BSR members across the full MDT, plus under- and post- graduate students from any disciplinary background.
To qualify for this member benefit, the applicant or their PI, academic lead or project supervisor must have been a member for at least a year. The team making the application must not include a commercial organisation.Successful applicants will be required to submit an abstract based on their findings to the BSR conference in due course and any paper to go to Rheumatology journal.
To apply, simply indicate on your application that you would like it to be considered by the committee for a bursary.