Swedish National Celiac Disease Register
type: Dataset
description: Celiac disease, also known as gluten intolerance, is a permanent sensitivity to gluten which is found in wheat, rye and barley. The cause of celiac disease is still unclear but we know that both heredity and environment play a role. In Sweden, celiac disease more common than in many other countries. It is crucial to find out why this is so and if we can reduce the incidence of celiac disease by changing lifestyle in any way. We can increase the awareness of celiac disease by following the pattern of the disease across the country as well as through other research. Since 1998 Sweden has had a unique incidence register for celiac disease in Sweden. The register was started through the initiative of the Swedish Pediatric Association (Barnläkarföreingen/BLF). In 1996 the Board offered new guidance on the introduction of gluten to the infant diet and the registry is an important part of quality assurance related to this. The registry is administered, via the BLF's Gastroenterology and Nutrition section and, at the Department of Epidemiology and Gublic Health, Umeå University. This includes, among other things, planning and ongoing work with the registry to regularly send back reports to the participating units and to compile the incidence trends. The register’s steering group consists of three pediatricians; one representative of the Section’s Board, the celiac disease working group on celiac disease, and the registry management. The registry has ethical approval and complies with the Personal Data Act and privacy regulations. Under this Act, children and parents have the right to obtain extracts from the register. Purpose: Through a nationwide registry for celiac disease in Swedish children the trend of the incidence of celiac disease can be followed and changes over time and geographical differences can be analyzed. The registry shall form the basis of other studies, for example disease etiology, opportunities for prevention, diagnosis, and long-term consequences with …
citation: CreativeWork
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citation: CreativeWork
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conditions of access: info:eu-repo/semantics/restrictedAccess
creative work status: completed
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  term code: COMPLETED
creator: Anneli Ivarsson
  type: Person
  affiliation: Umeå University
  family name: Ivarsson
  given name: Anneli
date modified: 2025-07-01
date published: 2020-11-19
keywords: HEALTH
keywords: Specific diseases, disorders and medical conditions
keywords: Medical and Health Sciences
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  term code: 3
keywords: Basic Medicine
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  term code: 301
keywords: Gastroenterology and Hepatology
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keywords: Diet and nutrition
keywords: Public Health, Global Health and Social Medicine
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  term code: 30311
keywords: Epidemiology
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  term code: 30116
keywords: Primary Prevention
keywords: Registries
keywords: Celiac Disease
keywords: Glutens
keywords: national register
keywords: infant feeding recommendations
keywords: grain
keywords: celiac
keywords: nutrition
keywords: Swedish Pediatric Association
keywords: wheat
keywords: rye
publisher: Umeå University
temporal coverage: 1998
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Umeå University
type: Organization
department: Department of Epidemiology and Global Health

HEALTH
type: DefinedTerm
term code: Health

Specific diseases, disorders and medical conditions
type: DefinedTerm
description: Data on specific, diagnosed diseases, disorders or syndromes (often classified in ICD-10 or its earlier versions). For example, medical research on infectious diseases or the causes of diabetes, or data on the physical and mental recovery of people who have had heart surgery.
term code: Health.SpecificDiseasesDisordersAndMedicalConditions

Diet and nutrition
type: DefinedTerm
description: Nutritional processes, eating patterns and practices, and measurable nutritional parameters such as body mass index (BMI), weight, vitamin levels.
term code: Health.DietAndNutrition

Primary Prevention
type: DefinedTerm
description: Specific practices for the prevention of disease or mental disorders in susceptible individuals or populations. These include HEALTH PROMOTION, including mental health; protective procedures, such as COMMUNICABLE DISEASE CONTROL; and monitoring and regulation of ENVIRONMENTAL POLLUTANTS. Primary prevention is to be distinguished from SECONDARY PREVENTION and TERTIARY PREVENTION.
term code: D011322

Registries
type: DefinedTerm
description: The systems and processes involved in the establishment, support, management, and operation of registers, e.g., disease registers.
term code: D012042

Celiac Disease
type: DefinedTerm
description: A malabsorption syndrome that is precipitated by the ingestion of foods containing GLUTEN, such as wheat, rye, and barley. It is characterized by INFLAMMATION of the SMALL INTESTINE, loss of MICROVILLI structure, failed INTESTINAL ABSORPTION, and MALNUTRITION.
term code: D002446

Glutens
type: DefinedTerm
description: Prolamins in the endosperm of SEEDS from the Triticeae tribe which includes species of WHEAT; BARLEY; and RYE.
term code: D005983