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Core skills in rheumatology
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Guidelines
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Requesting registers data
Overview
Find out how you can access and analyse the rich registers datasets that the society holds.
The society operates four biologics and biosimilars registers; these produce a variety of datasets which you can use for your research.
You can access
previously published papers
, or
submit your research questions
directly to the registers teams for them to investigate, or to allow you to collaborate with them in the analysis.
Society members can access the data free of charge.
External applicants will be charged for the costs of data extraction and administration; you will be notified when your application is reviewed. Charges for the data will be set on a case-by-case basis.
How to request data
Requests to conduct research with the Rheumatoid Arthritis (RA) and Ankylosing Spondylitis (AS) registers data follow a formal process. This is to:
Contact the academic team in
Manchester
for RA registers data or the
Aberdeen
team for AS registers data to ensure they have the data you hope to analyse
Read the terms and conditions for data use, and complete the below application form
Submit the application form (there are three deadlines within any year, which link to committee meetings where your request will be considered)
At their next meeting, the Registers committee reviews applications. The criteria includes:
The quality of the science
The experience of the candidates to undertake the work
The relevance of the data for answering the proposed questions and the feasibility of the analysis
You will then be notified as to whether your request has been accepted.
Please be aware that the length of time from request to approval and then 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.
Continue reading
Read less
Requesting paediatric data
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
.
Terms and conditions
Read more
Apply for data access
Submit the form