Dr Chenqu Suo
Cambridge CB2 0QQ
About the study
Chronic recurrent multifocal osteomyelitis, also known as chronic nonbacterial osteomyelitis (CNO), is a rare autoinflammatory bone disease. It is characterised by bone pain and swelling. CRMO/CNO occurs primarily in children and teenagers. There is a spectrum of severity with mild cases only requiring nonsteroidal anti-inflammatory drugs (NSAIDs) for disease control, compared to severe cases with serious complications such as vertebral fracture, who require multiple medications such as bisphosphonate and immunosuppressants.
Though first described over four decades ago, we still do not know how common CRMO/CNO is. Therefore, this study intends to determine the incidence of CRMO/CNO in the UK and the Republic of Ireland. We will also analyse the disease epidemiology, clinical features, how CRMO/CNO is managed currently, and one-year outcomes.
Children and young people up to but not including the age of 16 years with a new diagnosis of possible CRMO/CNO, namely those who have the following features:
- The presence of localised bone pain, which could be single site or multiple sites
- The presence of typical radiological findings on plain X-ray (examples include: lysis, sclerosis, cortical thickening or periosteal reaction) or on MRI (examples include: bone marrow oedema on fluid sensitive sequences, or periostitis (periosteal inflammation))
- The treating clinician has determined that the clinical features are not explained by an alternative diagnosis, eg trauma, infection or neoplasm
Please report children/young people up to the age of 16 years with new diagnosis of possible CRMO/CNO in the last month in the UK and Republic of Ireland.
October 2020 to October 2021 (13 months of surveillance).
Follow-up until October 2022 (12-month follow-up).
The study is funded through the Sir Peter Tizard Bursary and a grant from Addenbrooke's Charitable Trust.
This study has been approved by London - Central Research Ethics Committee (reference: 20/LO/0195); HRA Confidentiality Advisory Group (reference: 20/CAG/0029); and Public Benefit and Privacy Panel for Health and Social Care (reference: 1920-0202).
Cambridge University Hospitals NHS Foundation Trust is the sponsor and data controller for this research study. The Data Protection Officer, Michelle Ellerback at Cambridge University Hospitals NHS Foundation Trust can be contacted at firstname.lastname@example.org.
The study team at Cambridge University Hospitals NHS Foundation Trust will use information from medical records for a medical research study. The lawful basis for collecting and using personal information in this study is article 6(1)(e) and article 9(2)(j) of the GDPR which allows us to process personal data when it is for scientific research in the public interest. We will collect information about children and young people diagnosed with CRMO/CNO from the doctors who are looking after them. Doctors will not provide identifying information like names and addresses, but they will provide personal information like sex, ethnic group and date of birth. The smallest amount of personal information will be used. We cannot withdraw or remove information from the study but personal information will be deleted or de-personalised when the study finishes. Cambridge University Hospitals NHS Foundation Trust will securely store this information for 20 years.
If you want access to the information in your child’s NHS records, then you should contact your child’s NHS hospital/doctor.
If you want to find out more about how personal information is used in the study, please contact Dr Chenqu Suo (email@example.com).
If you wish to complain about the use of your personal information, then you should contact the Information Commissioner’s Office:
Information Commissioner’s Office
Cheshire SK9 5AF
Helpline number: 0303 123 1113
- CRMO-UK facebook group
- Rare Autoinflammatory Conditions Community - UK (RACC-UK)