New study aims to cut diagnostic delays for rare bone disease
NCT ID NCT05596539
First seen Jun 26, 2026 · Last updated Aug 06, 2026 · Updated 3 times
Summary
This study follows 130 adults with hypophosphatasia, a rare bone disorder, to understand how they are diagnosed and what symptoms they have. Researchers hope to find ways to reduce the long delay between first symptoms and diagnosis. No treatment is being tested; this is purely an observation and data collection effort.
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 diagnose hypophosphatasia earlier in adults, leading to better management.
- What could go wrong
- This is an observational registry, not a treatment trial. It may not lead to any direct medical advances or changes in care.
This is an AI summary of the original study and may miss details. Read our disclaimer.
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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
Locations
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CHU Lille
RECRUITINGLille, 59000, France
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CHU Nice
RECRUITINGNice, France
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CHU Poitiers
RECRUITINGPoitiers, 86000, France
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CHU Rennes
RECRUITINGRennes, 35000, France
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CHU Saint-Etienne
RECRUITINGSaint-Priest-en-Jarez, 42270, France
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CHU de Bordeaux- Hôpital Pellegrin Place Amélia Raba Léon - 12è étage - Rhumatologie -
RECRUITINGBordeaux, France, 33076, France
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CHU de Toulouse
RECRUITINGToulouse, 31059, France
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Cochin Hospital
RECRUITINGParis, 75014, France
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Hospices Civils de Lyon
RECRUITINGLyon, 69003, France
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Lariboisière Hospital
RECRUITINGParis, 75010, France
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Les hôpitaux universitaires de Strasbourg
RECRUITINGStrasbourg, 67200, France
More trials for these conditions
Other studies related to the condition(s) this trial covers.
- Newborn screening study aims to catch rare diseases at birth
- Genetic deep dive uncovers hidden clues in rare bone disease
- Scientists launch largest-ever natural history study for rare bone disease hypophosphatasia
- Could your body fight back against this rare disease drug?
- New study tracks rare bone disease to unlock clues for better diagnosis
- Withdrawn study aimed to counteract antibodies blocking hypophosphatasia drug