An observational study in Auto Inflammatory Diseases, sponsored by Assistance Publique - Hôpitaux de Paris. Not yet recruiting. Open to participants aged 18 Years and older. Per ClinicalTrials.gov, last updated 2025-09-11.
Sponsored by Assistance Publique - Hôpitaux de Paris · Observational
SITRAME syndrome is a recently described disease. In the absence of epidemiological data on SITRAME syndrome in France, the National Reference Center for Autoinflammatory Diseases proposes coordinating a database to collect both retrospective and prospective cases of this rare disease.
Currently, there are no available data on the epidemiology or treatment of SITRAME syndrome in France or globally. The importance of this research is to provide an overview of demographic, etiological, and disease progression data for patients with SITRAME syndrome in France. This will allow the establishment of quantitative data on the morbidity and mortality of this rare disease.
Assistance Publique - Hôpitaux de Paris is the lead sponsor of 3,505 studies on the registry; 1,006 are open to participants now.
Counted across the registry records on this site, refreshed daily.
Patients will be recruited in France via the national reference center for autoinflammatory diseases at Tenon Hospital (Internal Medicine, Dermatology and Allergology Department at Tenon Hospital).
All the following criteria must be met:
And at least 1 of the following criteria:
And all the following exclusion criteria must be met:
Exclusion Criteria:
- Persons with special protection cannot be included in the study:
Description of the sexe at the diagnosis of the disease in order to describe the clinical characteristics of patients followed for SITRAME syndrome
Time frame: Day 0- Baseline
Description of the age at the diagnosis of the disease
Description of the age at the diagnosis of the disease in order to describe the clinical characteristics of patients followed for SITRAME syndrome
Time frame: Day 0- Baseline
Description of cardiovascular co-morbidity
Description of cardiovascular co-morbidity at the diagnosis of the disease in order to describe the clinical characteristics of patients followed for SITRAME syndrome
Time frame: Day 0- Baseline
Description of presence of an allergical context
Description of presence of an allergical context in order to describe the clinical characteristics of patients followed for SITRAME syndrome
Time frame: Day 0- Baseline
Description of the different therapeutic lines
Description of the different therapeutic lines in order to describe the clinical characteristics of patients followed for SITRAME syndrome
Time frame: Year 15
Description of the age at death
Description of the age at death in order to describe the clinical characteristics of patients followed for SITRAME syndrome
Time frame: Day 0- Baseline
Measure of the prevalence of this disease annually using the register of newly included patients
Time frame: Every year up to 15 years
Measure of the incidence of this disease
Measure of the incidence of this disease annually using the register of newly included patients Time frame: annually
Time frame: Every year up to 15 years
Description of the rare clinical manifestations (outside of the well-established disease criteria)
Time frame: Year 15
Description of the rare biological manifestations (outside of the well-established disease criteria)
Time frame: Year 15
Measure of the number of patients eligible for various clinical research studies on SITRAME syndrome
Time frame: Every year up to 15 years
Measure of the proportion of patients using targeted therapies throughout the study
Time frame: Year 15
Measure of the number of deaths in patients followed for SITRAME syndrome
Time frame: every 5 years up to 15 years
Description of the death causes in patients followed for SITRAME syndrome
Time frame: every 5 years up to 15 years
Number of dead patients followed for SITRAME syndrome with presence and pattern of extracutaneous involvement (pulmonary manifestations)
Number of dead patients followed for SITRAME syndrome with presence and pattern of extracutaneous involvement (pulmonary manifestations) in order to describe the clinical characteristics of this population
Time frame: every 5 years up to 15 years
Number of dead patients followed for SITRAME syndrome with presence and pattern of extracutaneous involvement (cardiac manifestations)
Number of dead patients followed for SITRAME syndrome with presence and pattern of extracutaneous involvement (cardiac manifestations) in order to describe the clinical characteristics of this population
Time frame: Every 5 years up to 15 years
Number of dead patients followed for SITRAME syndrome with presence and pattern of extracutaneous involvement (neurological manifestations)
Number of dead patients followed for SITRAME syndrome with presence and pattern of extracutaneous involvement (neurological manifestations) in order to describe the clinical characteristics of this population
Time frame: every 5 years up to 15 years
Number of dead patients followed for SITRAME syndrome with presence and pattern of extracutaneous involvement (gastrointestinal manifestations)
Number of dead patients followed for SITRAME syndrome with presence and pattern of extracutaneous involvement (gastrointestinal manifestations) in order to describe the clinical characteristics of this population
Time frame: every 5 years up to 15 years
C-reactive protein (CRP) rate in the population of dead patients followed for SITRAME syndrome
C-reactive protein (CRP) rate in the population of dead patients followed for SITRAME syndrome in order to describe the biological characteristics of this population
Time frame: every 5 years up to 15 years
Frequency of inflammatory flares throughout the disease course in the population of dead patients followed for SITRAME syndrome
Frequency of inflammatory flares throughout the disease course in the population of dead patients followed for SITRAME syndrome in order to describe the biological characteristics of this population
Time frame: every 5 years up to 15 years
Ferritin rate of the dead patient followed for SITRAME syndrome
Ferritin rate of the dead patient followed for SITRAME syndrome in order to describe the biological characteristics of this population
Time frame: every 5 years up to 15 years
Liver enzymes rate of the dead patient followed for SITRAME syndrome
Liver enzymes rate of the dead patient followed for SITRAME syndrome in order to describe the biological characteristics of this population
Time frame: every 5 years up to 15 years
Creatinine rate of the dead patient followed for SITRAME syndrome
Creatinine rate of the dead patient followed for SITRAME syndrome in order to describe the biological characteristics of this population
Time frame: every 5 years up to 15 years
Red blood cells rate of the dead patient followed for SITRAME syndrome
Red blood cells rate of the dead patient followed for SITRAME syndrome in order to describe the biological characteristics of this population
Time frame: every 5 years up to 15 years
Platelets rate of the dead patient followed for SITRAME syndrome
Platelets rate of the dead patient followed for SITRAME syndrome in order to describe the biological characteristics of this population
Time frame: every 5 years up to 15 years
Hemoglobin rate of the dead patient followed for SITRAME syndrome
Hemoglobin rate of the dead patient followed for SITRAME syndrome in order to describe the biological characteristics of this population
Time frame: every 5 years up to 15 years
Hematocrit rate of the dead patient followed for SITRAME syndrome
Hematocrit rate of the dead patient followed for SITRAME syndrome in order to describe the biological characteristics of this population
Time frame: every 5 years up to 15 years
Mean corpuscular volume (MCV) rate of the dead patient followed for SITRAME syndrome
Mean corpuscular volume (MCV) rate of the dead patient followed for SITRAME syndrome in order to describe the biological characteristics of this population
Time frame: every 5 years up to 15 years
White blood cells rate of the dead patient followed for SITRAME syndrome
White blood cells rate of the dead patient followed for SITRAME syndrome in order to describe the biological characteristics of this population
Time frame: every 5 years up to 15 years
Neutrophils rate of the dead patient followed for SITRAME syndrome
Neutrophils rate of the dead patient followed for SITRAME syndrome in order to describe the biological characteristics of this population
Time frame: every 5 years up to 15 years
Lymphocytes rate of the dead patient followed for SITRAME syndrome
Lymphocytes rate of the dead patient followed for SITRAME syndrome in order to describe the biological characteristics of this population
Time frame: every 5 years up to 15 years
Monocytes rate of the dead patient followed for SITRAME syndrome
Monocytes rate of the dead patient followed for SITRAME syndrome in order to describe the biological characteristics of this population
Time frame: every 5 years up to 15 years
Eosinophils rate of the dead patient followed for SITRAME syndrome
Eosinophils rate of the dead patient followed for SITRAME syndrome in order to describe the biological characteristics of this population
Time frame: every 5 years up to 15 years
Basophils rate of the dead patient followed for SITRAME syndrome
Basophils rate of the dead patient followed for SITRAME syndrome in order to describe the biological characteristics of this population
Time frame: every 5 years up to 15 years
No study locations are listed for this record.
Plan to share: No
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This study is not yet recruiting, as verified in Aug 2025. You cannot join it, but the record below documents what was studied.
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