Post-transition Clinical and Socio-professional Future in Adult Patients With Recurrent Multifocal Chronic Osteitis

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.

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Key information

Conditions

Chronic Recurrent Multifocal Osteomyelitis

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

Service Rhumatologie Pédiatrique Centre De Référence Maladies Rares RAISE Hôpital Femme Mère Enfant, Bron, France

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

Adult Patient with a CRMO with pediatric-onset disease (> 18years)
Patient who was informed and agreed to participate in this study

Exclusion criteria

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

Treatment and study plan

Questionnaire

Other

Questionnaires concerning assesment of quality of life with 3 different questionnaires ( SF36, HAQ and pre-established questionnaire for the study) during a phone interview

Primary outcomes

Impact of the disease on the quality of life of adult CRMO patients with pediatric-onset disease.

Time frame: 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

Sponsors and collaborators

Lead sponsor

Hospices Civils de Lyon

Other

Registry information

Acronym: ESPERANTO

Important dates

Study start: 2020
Primary completion: 2020
Study completion: 2020
First posted: Nov 2, 2021
Registry last updated: Nov 10, 2021

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

Published trials that share one or more normalized conditions with this study.

Recruiting