Registry for chronic nonbacterial osteomyelitis

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This study aims to create a prospective registry for chronic recurrent multifocal osteomyelitis (CRMO) and chronic nonbacterial osteomyelitis (CNO) to better understand the disease's natural history and patient responses to various treatments over a decade. It focuses on children and adolescents affected by this autoinflammatory bone disease, which can lead to serious complications if not treated properly. The registry will collect data on clinical assessments, imaging studies, and treatment outcomes to standardize care and improve management strategies for affected patients.

Why it matters

Who can join: the full rules

Inclusion Criteria:

* \- Age at enrollment is equal to or younger than 21 years of age
* Presence of bone edema on STIR or T2 fat saturation sequence on MRI within 12 weeks of enrollment
* Whole body imaging evaluation (either WB MRI or bone scintigraphy)
* Bone biopsy to exclude infection or malignancy unless bone lesions follow typical distribution or there is IBD, psoriasis, or palmar plantar pustulosis

Exclusion Criteria:

* \- History of or current malignancy
* Current infectious osteomyelitis
* Contraindication to the selected treatment agent

Where it's running

• Seattle Children's Hospital
  Seattle, Washington, United States Recruiting

Study contacts

• Study coordinator: Yongdong (Dan) Zhao, MD, PhD
• Email: crmoresearch@seattlechildrens.org
• Phone: 206-987-2000

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

• Reliability of a whole-body MRI score for CRMO

  This study will test whether a standardized whole-body MRI score reliably reflects disease activity and treatment response in children with CRMO.

  Recruiting IRCCS Azienda Ospedaliero-Universitaria di Bologna · Bologna · NCT07483853

• Registry for patients with rare diseases

  This study is creating a central registry for people with rare diseases to help connect them with researchers and improve treatments.

  Recruiting Sanford Health · Sioux Falls, South Dakota · NCT01793168

• Familial IBD Early Risk

  This study tests whether clinical, environmental, and immune factors in first-degree relatives of people with Crohn’s disease or ulcerative colitis can predict who will develop IBD.

  Recruiting Seattle Children's Hospital · Seattle, Washington · NCT07791862

• Long-Term Follow-Up of Gene Therapy Patients Treated at Seattle Children's

  This long-term follow-up study tests the safety of Seattle Children's Therapeutics gene therapy products in people who have already received at least one infusion, for up to 15 years after their last treatment.

  Recruiting Seattle Children's Hospital · Seattle, Washington · NCT07424157

• New ways to detect lung infections in people with cystic fibrosis

  This study is testing new methods to find harmful lung bacteria in people with CF who can still produce sputum, especially those on modern CF therapies.

  Recruiting at 6 sites Seattle Children's Hospital · La Jolla, California and 8 other locations · NCT07312734

• Organizational skills training versus a mindfulness-based group program for teens with ADHD

  This project will test whether an eight-session organizational skills program or an eight-session mindfulness program helps teens (ages 13–17) with ADHD when delivered as telehealth groups.

  Recruiting Seattle Children's Hospital · Seattle, Washington and 1 other locations · NCT07281092

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.