Post-transition Clinical and Socio-professional Future in Adult Patients With Recurrent Multifocal Chronic Osteitis
- Conditions
- Chronic Recurrent Multifocal Osteomyelitis
- Registration Number
- NCT05103137
- Lead Sponsor
- Hospices Civils de Lyon
- Brief Summary
Chronic Recurrent Multifocal Osteomyelitis (CRMO) is a rare autoinflammatory bone disease in children. Studies evaluating the quality of life of patients with CRMO are small and heterogeneous. A better understanding of the impact of the disease on the quality of life of adult patients with CRMO beginning in childhood would allow better long-term management of these patients. Our study aims are to assess the clinical and socio-professional outcomes of adult patients who started CRMO at pediatric age.
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- COMPLETED
- Sex
- All
- Target Recruitment
- 16
- Adult Patient with a CRMO with pediatric-onset disease (> 18years)
- Patient who was informed and agreed to participate in this study
- Patients with Monogenic auto-inflammatory disease associated with osteolytic bone lesions (e.g. interleukin-1 receptor antagonist deficiency)
- Patient with Majeed syndrome
- Patient without sufficient imaging data to confirm the presence of one or more inflammatory lesions
- Patients with incomplete data.
- Patients placed under legal protection, guardianship or curatorship
Study & Design
- Study Type
- OBSERVATIONAL
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method Impact of the disease on the quality of life of adult CRMO patients with pediatric-onset disease. 20 minutes Result of the SF 36 (Short Form 36) quality of life questionnaire compared to data in the general population and other published data available in CRMO and inflammatory diseases in children.
This questionnaire is composed of 36 questions which allow to calculate two scores of the quality of life of individuals: the physical composite score (SCP) and the mental composite score (SCM). The higher the score the higher the capacity.
Range 0 to 100
- Secondary Outcome Measures
Name Time Method
Trial Locations
- Locations (3)
Service Rhumatologie Pédiatrique Centre De Référence Maladies Rares RAISE Hôpital Femme Mère Enfant
🇫🇷Bron, France
Service de Rhumatologie Centre Hospitalier Edouard Herriot
🇫🇷Lyon, France
Service de Rhumatologie Centre Hospitalier Lyon Sud
🇫🇷Pierre-Bénite, France