Scientists launch largest-ever natural history study for rare bone disease hypophosphatasia
NCT ID NCT02237625
First seen Jun 24, 2026 · Last updated Jun 27, 2026 · Updated 1 time
Summary
This study follows 200 children and adults with hypophosphatasia (HPP), a rare genetic disorder that weakens bones and teeth. Researchers will collect medical history, track disease progression, and assess quality of life over time. The goal is to better understand how HPP affects the body and what long-term complications may arise. No experimental treatments are given; this is purely an observation study.
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 provide crucial insights into how hypophosphatasia progresses, helping doctors improve care and develop better treatments.
What could go wrong
This is an observational study, not a treatment trial. It will not test any new drug or therapy, so there is no direct benefit to participants. Results may take years to influence clinical practice.
Disclaimer
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the original study
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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.
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.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
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Study contacts
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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Duke University Medical Center
RECRUITINGDurham, North Carolina, 27710, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
Contact Phone: •••-•••-•••• Email: •••••@•••••