In 1996 the Swedish association for rheumatology – Svensk Reumatologisk Förening – initiated a national quality register. Back then, the only mission of the register was to follow up on patients with rheumatoid arthritis. Today, the register covers over a hundred different rheumatic diagnoses and includes 89,000 patients.
SRQ has been granted the highest degree of certification that exists for national quality registers.
The purpose of SRQ is to continually improve the treatment and follow up of patients with rheumatic disease.
Doctors, nurses, physiotherapists and occupational therapists from 56 different clinics for rheumatology all over the country insert health-data to the register. In addition, many patients themselves, through the Patient’s Self Registration (PER), insert information about their well-being prior to every doctor’s visit. In this way, a huge database containing information about the health status and treatment of patients is acquired.
The database is important for two reasons. Firstly, care providers and patients can take view the patient’s heath-data in real time while deciding about further treatment and care. Secondly, the database can be used as a basis for research on rheumatic diseases.
Each year around forty different scientific studies using data from SRQ are conducted. By analyzing data from the register, the researchers can draw conclusions about the epidemiology and progress of rheumatic diseases and the efficiency of different diagnostic and therapeutic efforts. For instance, research has shown that living habits, such as smoking, physical activity and diet, affect both the risk of getting a rheumatic disease and the prognosis of it. This is a very important result, since it means that the patients themselves can influence their well-being quite a lot.
Anyone cannot perform research on data from SRQ. The researchers must apply for permission and be approved by the Register Council of Svensk Reumatologisk Förening.
It is SRQ’s responsibility to make sure that all data in the register is being handled confidentially. SRQ does not release any personal data from the register, not even to researchers performing studies on register data.
Care givers that insert information to SRQ are responsible for their own handling of information in the register, for example that the information matches the right patient, that the patient is informed according to the legislative requirements and that the local users of the register are qualified to access the information.
The Register holder leads the SRQ and is responsible for the activity at the register. In addition to the Register holder, SRQ has a steering group and a quality group. The steering group is the decision-making authority, broadly deciding about the function and development of the register. The quality group is a special working group, focusing on the quality issues of the register.
The day-to-day work at the register is carried out by an executive office. The office’s work includes quality coordination, education, extracting data from the register and compiling statistics. In addition, the office coordinates many different projects of development.
You will find contact information for both the Register holder and the office personnel under the tab “Contact”.