British Society for Rheumatology > Knowledge > Registers > Requesting Registers data for your own research

Requesting Registers data for your own research

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Requesting Registers data for your own research

We encourage all of our members and external parties to access and analyse the rich registers data sets. Requests to conduct research with the Rheumatoid Arthritis (RA) and Ankylosing Spondylitis (AS) registers data follow a formal process as detailed below:

  1. Please read the terms and conditions for data use and application form.
  2. Contact the academic team in Manchester for RA registers data or the Aberdeen team for AS registers data, to establish that they have the data you hope to analyse.
  3. Complete the third party data request application form and submit it to the Registers Steering Committee for consideration. There are three deadlines within any year which will link to the Committee meetings. The dates for 2019 are:

    • Monday 07 January 2019
    • Monday 20 May 2019
    • Monday 21 October 2019

  4. If approved, the process to supply the data will begin.

Please 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 appropriate registers team before submitting the grant application.

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, please contact Prof Kimme Hyrich in the first instance.

You can also submit your research questions directly to the registers teams for them to investigate or collaborate with them in the analysis.

Other registers modules

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.

Find out more

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.

Find out more

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 Autumn 2018.

Find out more

Juvenile idiopathic arthritis register

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

Find out more

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