Understanding the progression of melorheostosis, a rare bone disease

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 observational study aims to investigate the natural history and pathogenesis of melorheostosis, a rare osteosclerotic disease characterized by excessive bone growth. Participants aged 18 and over with melorheostosis, as well as their unaffected relatives, will undergo comprehensive evaluations including medical history, physical exams, and various tests such as blood and urine collection, X-rays, and neurological assessments. The study will follow participants over time to assess disease progression and explore potential genetic factors associated with the condition.

Why it matters

Who can join: the full rules

* INCLUSION CRITERIA:

All eligible patients are invited to participate in this protocol. Patients are adults aged \> 18 years with possible melorheostosis (suspected or confirmed). Since both men and women are affected with the disease, both sexes will be studied. All ethnic and racial groups are at risk and will be included.

Relatives of patients with melorheostosis may be included for genetic testing only.

EXCLUSION CRITERIA:

* Pregnant or lactating women. A pregnancy test is performed in women of childbearing potential (up to age 55) unless they have a history of hysterectomy or tubal ligation.
* Children (age less than 18 years) are excluded.
* Subjects with severe active infection or other co-morbidities that in the opinion of the investigator would warrant exclusion.
* Subjects unable to provide informed consent.

Where it's running

• National Institutes of Health Clinical Center
  Bethesda, Maryland, United States Recruiting

Study contacts

• Principal investigator: Dale M Kobrin, M.D. — National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
• Study coordinator: Nancy A Spencer
• Email: nancy.spencer@nih.gov
• Phone: (301) 435-8434

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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.