CHronic nonbacterial Osteomyelitis International Registry (CHOIR)
Melissa Oliver, MD
Primary Investigator
Brief description of study
What is the purpose of this study?
The objective of the study is to establish a prospective disease registry for chronic recurrent multifocal osteomyelitis (CRMO)/chronic nonbacterial osteomyelitis (CNO) in order to investigate the natural history of the disease and the responses of patients to different clinical managements over 5 years
Detailed description of study
What will happen during the study?
This is a multicenter registry which involves the following procedures:
Prospective Chart review: will be performed to collect data when subjects and
caregivers come to Seattle Children’s Hospital or a participating site for a
scheduled clinic visit.
Retrospective Chart review: may also be performed for visits which occurred
prior to informed consent, as long as these are already available in the medical
record.
Safety Procedures: The required portions of the study are limited to ongoing
review of the subject’s medical record, and therefore carry very minimal risk.
Questionnaires: Subject’s will be asked several questions that are not in their
medical chart such as their demographics, complete medical history,
medications, etc.
At Seattle Children’s, subjects typically come to clinic at the every 3-12 months interval
after diagnosis, however, this may vary at participating sites.
No additional visits to the hospital will be requested as all study-related questionnaires will be done when subject comes to the site for a standard of care scheduled clinic visits.
Access to standard care will not be delayed or precluded by participation in this registry.
Adults who are unable to consent and lack a legal guardian, wards of the state, and prisoners will be excluded. Caregivers will be reporting about the subject’s medical history therefore they are not
considered study subjects.
Eligibility of study
You may be eligible for this study if you meet the following criteria:
- Conditions: Chronic nonbacterial osteomyelitis, CNO, Riley
-
Age: 100 years or below
-
Gender: All
Inclusion Criteria:
- Presence of bone edema on STIR or T2 fat saturation sequence on MRI within 12<br>weeks of enrollment (optional)
- Whole body imaging evaluation (either WB MRI or bone scintigraphy) is optional
- Bone biopsy to exclude infection or malignancy when indicated
Exclusion Criteria:
- History of or current malignancy
- Current infectious osteomyelitis
- Contraindication to the selected treatment agent
