Here’s how to do research on data from SRQ
Send your application to the SRQ office, Maud Rütting, firstname.lastname@example.org.
The application is then examined by the Register Council of Svensk Reumatologisk Förening – the Swedish association for rheumatology, which conducts a menial examination in consultation with the Register holder. In most cases, only unidentified data and the variables relevant to the research are given to the researcher. All requested documents and attachments must be submitted for processing. The Register Council meets about once a month during the term.
General information on Swedish quality registers and research on data from quality registers can be found at www.kvalitetsregister.se.
Centralt personuppgiftsansvarig myndighet – Central data responsible authority (CPUA)
The CPUA is in charge of the management of personal data at the central registry level in a quality register. This includes decisions on disclosure of register data. For SRQ, the CPUA is represented most closely by Jon Lampa, Patient Area Manager at the patient area Gastro, Skin and Rheuma, Karolinska University Hospital, email@example.com.
Publishing, recognition and authorship
For all publications using data from SRQ, the method section should state that data is retrieved from SRQ. For authorship, the usual rules apply.
It is also important that SRQ receives information about all publications generated from SRQ data, as SRQ is required to report which research results the registry has contributed to. The information is sent to the SRQ Office, Ann-Charlotte Blom, firstname.lastname@example.org.