Rare bone disease under the microscope: what causes melorheostosis?
NCT ID NCT02504879
First seen Jun 26, 2026 · Last updated Sep 17, 2026 · Updated 7 times
Summary
This study follows adults with melorheostosis, a rare disease that causes bone thickening, pain, and joint problems. Researchers will track how the disease progresses over time, collect genetic samples from patients and their relatives, and look for biomarkers. The goal is to better understand the disease's causes and natural course, not to test a new treatment.
What this could mean
Our plain-language read of the trial. This is informational only, not medical advice or a prediction.
- What this could lead to
- If successful, this study could reveal what causes melorheostosis and how it changes over time, pointing toward future treatments.
- What could go wrong
- This is an observational study, not a treatment trial. It may not lead directly to new therapies, and results depend on long-term participation.
This is an AI summary of the original study and may miss details. Read our disclaimer.
Study facts
What this study's own registry entry says, in plain language.
- Participants
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About 350 people
The number the study aims to enrol. It can still change while the study runs.
- Started
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Aug 2015
- Expected to finish
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Jul 2030
An estimate. End dates often move.
- Lead sponsor
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A government research agency
The lead sponsor is the US National Institutes of Health.
Who can take part
This study's own entry requirements. Only the study team can say for certain whether you qualify.
Who is studied
Patients aged \> 18 years with possible melorheostosis. Relatives of patients with melorheostosis may be included for genetic testing only
- Ages
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18 to 90 years
- Sex
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Anyone
- Healthy volunteers
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Accepted
You do not need to have the condition being studied to take part.
Show the full entry requirements Hide the full entry requirements
Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.
* 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.
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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
How to take part
Only the study team decides who joins. These are the ways to reach them.
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The places running it
1 site. The list below names each one and where it is.
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The official record
ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.
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A doctor treating you
A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.
Contacts and locations
Locations
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National Institutes of Health Clinical Center
RECRUITINGBethesda, Maryland, 20892, United States
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