Swedish Inflammatory Bowel Disease Register (SWIBREG) – a nationwide quality register

Figures & data

Figure 1. Number of recorded IBD patients in Swibreg from its start in 2005.

Figure 2. Coverage of SWIBREG compared with the National Patient Register. Letters represent participating counties.

Figure 3. Decision support system in SWIBREG.

Figure 4. Short Health Scale.

Figure 5. Physicians global assessment in patients with ulcerative colitis.

Figure 6. SWIBREG contains information on diagnosis, disease activity, ongoing medical treatment, and date of last check-up.

Table 1. Research priorities indicated by the IBD patient community.

Main research area	Requested research
Cause of IBD	Identify the causes of IBD / identify new (unknown) risk factors for IBD
	Role of antibiotics
	Importance of the diet
	Genetic vs. environmental risk factors. Degree of heritability
	Role of Helicobacter pylori
	Role of prior vaccinations
	Role of stress
Treatment	More effective drugs
	Enteral nutrition in IBD
	Drugs that can prevent relapse
	Optimization and exit strategies
	Identify drugs with fewer side effects
	Long-term effects of biological treatment
	Apheresis
	The use of probiotics, and the role of the microflora
	Pain management in IBD
	Can gene therapy prevent IBD?
	Faecal transplantation
Psychosocial/wellbeing	The importance of patient education for IBD management
	Physical exercise and IBD
	Effects on education. How to manage university studies despite having IBD
Complications and associated disorders	Relationship to psychiatric disease
	Relationship to other inflammatory disorders
	Cardiovascular disease in IBD
	Chronic fatigue in IBD
	Arthritis in IBD
	Primary sclerosing cholangitis in IBD
	Relationship between IBD and coeliac disease
	Herpes simplex in IBD
	Malnutrition and malabsorption in IBD and their consequences
	Other autoimmunity in IBD
	Allergic diseases in IBD
	Dental issues in IBD
	Cause of fistulae in IBD
Surgery	The role of surgery
	Fistula surgery
	Does surgery influence the immune system in IBD?
Various	How does pregnancy influence the course of IBD?
	IBD in the pregnant mother and adverse pregnancy outcome
	Whether biologics can be used during pregnancy in women with IBD
	The role of alternative medicine in IBD
	High disease activity despite normal Faecal Calprotectin, CRP and other inflammatory markers
	Smoking and snuff use and IBD

Data sharing

Other researchers can apply for our data through the steering group of SWIBREG (see address to corresponding author Myrelid).