Marina Dehara

I am a project coordinator at the Clinical Epidemiology Division, at the Department of Medicine, Solna. My role revolves around working with the management and coordination of the Karolinska Risk-RA, the Epidemiological Investigation of Rheumatoid Arthritis (EIRA), and the Swedish Rheumatology Quality Register (SRQ) cohorts. My duties involve administering these three research data collections, extracting data from these sources to support various research projects, and providing analytical and epidemiological expertise across various projects.

Karolinska Risk-RA

The Karolinska Risk-RA is a prospective research programme that started in 2014, recruiting individuals from all three rheumatology clinics in Region Stockholm, Sweden: Karolinska University Hospital (Solna and Huddinge), Academic Specialist Center (Center for Rheumatology, CFR) and Danderyd Hospital. The Risk RA cohort study individuals with musculoskeletal symptoms and systemic autoimmunity, specifically anti-citrullinated protein antibodies (ACPA). The aim of the cohort is to understand how symptoms and biomarkers evolve over time in individuals who develop arthritis within 3 years compared with those who do not. Particular emphasis lies on the development of predictors for ACPA-positive arthritis development and on the presence of pain and fatigue over time in individuals in the cohort. The program includes assessing the impact of genetics and environmental and lifestyle factors on the risk for arthritis development and on the symptomatology during the observation time, using an extensive questionnaire for lifestyle and environment and genome-wide association studies (GWAS)-based genetic analysis. The Risk-RA cohort encompasses about 500 people, who are followed up through the Risk-RA register over 3 years in a predefined schedule or until the onset of arthritis.

Epidemiological Investigation of Rheumatoid Arthritis (EIRA)

EIRA is an ongoing population-based case-control study based on incident cases of RA in Sweden. The study base comprises adult men and women in areas from the southern and central parts of Sweden from May 1996 and onwards. The age limit was initially 18 to 70 years of age, but after April 2011 participants older than 70 were also included. The purpose of the EIRA study is to investigate the causes of rheumatoid arthritis. It is one of the largest of its kind in the world where both environment and genetics are studied. For each case, 1-2 controls were randomly selected from the population register shortly after case identification and matched to the case on age, sex, and residential area. From January 2006, two controls instead of one were collected for the EIRA study. The study collects information on demographic-, socioeconomic- and psychosocial factors, lifestyle, occupational history, and occupational exposures through an extensive questionnaire. Cases received the questionnaire at the clinic, whereas the controls by post. Blood samples are also collected for genetic analyses. To date, more than 3500 cases and 5350 controls have participated in the study.

Swedish Rheumatology Quality Register (SRQ)

The Swedish Rheumatology Quality Register (SRQ) is a national quality register founded in 1995 by the Swedish Rheumatology Society. Its purpose is to improve the treatment and follow-up of patients with rheumatic diseases at rheumatology clinics as part of standard care. SRQ has approximately 85% coverage. SRQ collects clinical data on disease activity, disability, drug initiation, drug discontinuation, and reason for discontinuation. Both patients and caregivers enter information in the register and make a joint decision on continued care based on the patient's health data. An important integrated part of the SRQ is the Anti Reumatisk Terapi I Sverige (ARTIS) register. ARTIS includes RA patients since 1999 who have received biologic anti-rheumatic drugs. This is a biological treatment register with the purpose of monitoring the safety and efficacy of new drugs. In 2023 there were more than 125, 000 registered patients in SRQ.