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AB0237 National registry for children with juvenile idiopathic arthritis (jia) and systemic connective tissue diseases
  1. T Garen,
  2. M Haugen,
  3. O Vinje,
  4. D Sørskaar,
  5. B Flatø,
  6. Ø Førre
  1. Centre for Rheumatic Diseases, The Natinal Hospital, Oslo, Norway

Abstract

Background Centre for Rheumatic Diseases is a National Centre for children with JIA and Connective Idiopathic Arthritis. In 1999 we established a registry to increase the knowledge about JIA and Connective Idiopathic Arthritis in addition to insure diagnosis and the treatment of the patients. The registry will also serve as a research database for the centre.

Methods To get an impression of disease development one uses seven questionnaires covering different areas. The medical part consists of 5 elements; Disease debut and diagnosis, classifications, doctors evaluation of disease activity, use of medicine and eventual side effects, and laboratory results.

The parents and if the patients are 15 years or older the patients themselves will fill inn questionnaires covering Child Health Assessment Questionnaire (CHAQ) and the family history.

The patients in the registry will be registered ones every year with a tolerance of ± 3 months.

The questionnaires have been prepared in the software program TELEFORM, and the data is read automatically with help of a scanner. However, to assure that the data is read correctly they have to be assured by personnel viewing in addition to the programs own verifier program. The data is put in the database program Access and SPSS is used for statistical calculations. When the data of the patients is put into the database we get with the help of TELEFORM?s merging program new questionnaires for each patient to be used at the next registration.

Results We have until now about 280 patients registered for the first time and 55 of these are also registered for a second time.

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