Long-Term study aims to unlock secrets of brittle bone disease

NCT ID NCT00001594

First seen Jun 25, 2026 · Last updated Jul 01, 2026 · Updated 3 times

Summary

This study followed 88 children and young adults with types III and IV osteogenesis imperfecta (brittle bone disease) to track how the condition changes over time. Researchers measured bone density, lung and heart function, hearing, and movement abilities. The goal was to better understand the disease's natural history and improve monitoring and care.

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 help doctors better predict and manage complications of osteogenesis imperfecta, improving care and quality of life.

What could go wrong

This is an observational study, not a treatment trial. It will not directly test any new therapy, so it cannot lead to a cure or immediate treatment.

Disclaimer Read more

This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

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Conditions

The condition(s) this trial relates to.

osteogenesis imperfecta osteogenesis imperfecta type 3 osteogenesis imperfecta type 4

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Contacts and locations

Locations

  • National Institutes of Health Clinical Center

    Bethesda, Maryland, 20892, United States