Ignite Creation Date:
2024-05-06 @ 4:04 PM
Last Modification Date:
2024-10-26 @ 2:02 PM
Study NCT ID:
NCT04856540
Status:
COMPLETED
Last Update Posted:
2023-01-18
First Post:
2021-04-13
Brief Title:
Adult Outcomes of Children With CAPS
Sponsor:
University Hospital Lille
Organization:
University Hospital Lille
Study Overview
Official Title:
Clinical Characteristic and Quality of Life Assessment in Adulthood of Patients With Cryopyrin Associated Periodic Syndrome
Status:
COMPLETED
Status Verified Date:
2023-01
Last Known Status:
None
Delayed Posting:
No
If Stopped, Why?:
Not Stopped
Has Expanded Access:
False
If Expanded Access, NCT#:
N/A
Has Expanded Access, NCT# Status:
N/A
Acronym:
CAPS
Brief 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 CINCANOMID 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
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
Detailed Description:
None
Study Oversight
Has Oversight DMC:
None
Is a FDA Regulated Drug?:
False
Is a FDA Regulated Device?:
False
Is an Unapproved Device?:
None
Is a PPSD?:
None
Is a US Export?:
None
Is an FDA AA801 Violation?:
None
Secondary IDs
| Secondary ID | Type | Domain | Link |
|---|---|---|---|
| 2021-A00585-36 | OTHER | ID-RCB numberANSM | None |