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Clinical Trial Summary

The patients included in this study were followed up in the Internal Medicine and Paediatrics Departments of the Lille CHU, the Paediatric Rheumatology and Immunology Department of the Necker Enfant Malade Hospital in Paris and the Paediatric Rheumatology Department and Internal Medicine of the Bicêtre Hospital in Paris. All patients selected presented one of the 3 CAPS clinical phenotypes (CINCA/NOMID, Muckle-Wells or Cold Urticaria). The mutation and the determination of the variant had to be confirmed by genetic analysis. Patient data were collected from their medical records, retrospectively. Data collected concern childhood period from appearance of symptoms, adulthood period, in the last year and patients' way of life and quality of life upon the assessment. In addition, we collected demographic data related to the patients' lifestyle (intoxications, living arrangements, level of education) and we conducted individual telephone interviews lasting 15 minutes to complete a quality of life questionnaire including the SF36 questionnaire. The study aimed to describe the clinical symptoms of patients in adulthood and to assess quality of life. We also wanted to compare the clinical phenotypes of patients according to their genetic variant.

Clinical Trial Description


Study Design

Related Conditions & MeSH terms

  • Cryopyrin Associated Periodic Syndrome
  • Cryopyrin-Associated Periodic Syndromes
  • Syndrome

NCT number NCT04856540
Study type Observational
Source University Hospital, Lille
Contact Eric Hachulla, MD,PhD
Phone 0320445962
Email [email protected]
Status Not yet recruiting
Start date June 2021
Completion date June 2022

See also
  Status Clinical Trial Phase
Completed NCT04086602 - Safety and Tolerability, Pharmacokinetic and Pharmacodynamic Study With IZD334 Phase 1
Completed NCT01105507 - The Safety and Efficacy of Canakinumab in Patients Aged 4 Years or Older Diagnosed With Cryopyrin-associated Periodic Syndromes (CAPS) in Canada Phase 3