In 1996, the Swedish association for rheumatology – Svensk Reumatologisk Förening – initiated a national quality register. The only task of the register was to follow up on patients with chronic rheumatoid arthritis. Today, the registry covers over 100 rheumatic diagnoses and includes 89,000 patients.
SRQ has been granted Certification Level 1, which is the highest level a National Quality Registry can receive.
The purpose of SRQ is to continuously improve the treatment and follow-up of patients with rheumatic diseases.
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 large 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.
SRQ is responsible for the confidentiality of all data entered into the registry. SRQ does not provide any personal data from the registry. Research on data from the register is always conducted at the group level, so individual individuals cannot be identified.
Healthcare providers who submit information to SRQ bear responsibility 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.
Contact information for both the Register holder and the office can be found under the “Contact” tab.