How to do research on SRQ data
Send your application to Maud Rütting at the SRQ office, firstname.lastname@example.org.
The application is then examined by the Register Council of Svensk Reumatologisk Förening – the Swedish association for rheumatology, which decides whether or not data can be withdrawn. In most cases, only unidentified data and variables relevant to the research are given to the researcher.
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. CPUA for SRQ is Cecilia Carlens, Patient Area Manager at the patient area Gastro, Skin and Rheuma, Karolinska University Hospital, email@example.com.
Which research requires approval of the Ethics Examination Board (EPN)?
All research, that is, studies to be published in scientific journals and to be performed on personal data in quality registers, shall be approved by EPN. The law on ethics testing of research includes research on living and deceased persons, biological material from humans as well as research involving the handling of sensitive personal data. Following a change in the law in 2008, all research involving the processing of sensitive personal data will be tested. This applies regardless of whether or not the researcher gave his explicit consent.
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.