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.

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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

  • CHU Lille

    RECRUITING

    Lille, 59000, France

  • CHU Nice

    RECRUITING

    Nice, France

  • CHU Poitiers

    RECRUITING

    Poitiers, 86000, France

  • CHU Rennes

    RECRUITING

    Rennes, 35000, France

  • CHU Saint-Etienne

    RECRUITING

    Saint-Priest-en-Jarez, 42270, France

  • CHU de Bordeaux- Hôpital Pellegrin Place Amélia Raba Léon - 12è étage - Rhumatologie -

    RECRUITING

    Bordeaux, France, 33076, France

  • CHU de Toulouse

    RECRUITING

    Toulouse, 31059, France

  • Cochin Hospital

    RECRUITING

    Paris, 75014, France

  • Hospices Civils de Lyon

    RECRUITING

    Lyon, 69003, France

  • Lariboisière Hospital

    RECRUITING

    Paris, 75010, France

  • Les hôpitaux universitaires de Strasbourg

    RECRUITING

    Strasbourg, 67200, France

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