New study aims to cut diagnostic delays for rare bone disease

NCT ID NCT05596539

First seen Jun 26, 2026 · Last updated Jun 27, 2026 · Updated 1 time

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.

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.

enthesopathy hypophosphatasia

As listed by the trial registrant

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

Contacts and locations

Study contacts

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

Locations

  • CHU Lille

    RECRUITING

    Lille, 59000, France

    Contact Phone: •••-•••-•••• Email: •••••@•••••

  • CHU Nice

    RECRUITING

    Nice, France

    Contact

  • CHU Poitiers

    RECRUITING

    Poitiers, 86000, France

    Contact Phone: •••-•••-•••• Email: •••••@•••••

  • CHU Rennes

    RECRUITING

    Rennes, 35000, France

    Contact

  • CHU Saint-Etienne

    RECRUITING

    Saint-Priest-en-Jarez, 42270, France

    Contact Phone: •••-•••-•••• Email: •••••@•••••

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

    NOT_YET_RECRUITING

    Bordeaux, France, 33076, France

    Contact Phone: •••-•••-•••• Email: •••••@•••••

  • CHU de Toulouse

    RECRUITING

    Toulouse, 31059, France

    Contact Phone: •••-•••-•••• Email: •••••@•••••

  • Cochin Hospital

    RECRUITING

    Paris, 75014, France

    Contact Phone: •••-•••-•••• Email: •••••@•••••

  • Hospices Civils de Lyon

    NOT_YET_RECRUITING

    Lyon, 69003, France

    Contact Phone: •••-•••-•••• Email: •••••@•••••

  • Lariboisière Hospital

    RECRUITING

    Paris, 75010, France

    Contact Phone: •••-•••-•••• Email: •••••@•••••

  • Les hôpitaux universitaires de Strasbourg

    RECRUITING

    Strasbourg, 67200, France

    Contact Phone: •••-•••-•••• Email: •••••@•••••