Global study tracks rare bone disease over time

NCT ID NCT02306720

Summary

This study is creating a long-term registry to better understand hypophosphatasia (HPP), a rare genetic bone disorder. It will follow over 1,500 patients of all ages worldwide to track how the disease progresses naturally and how it affects daily life. The registry will also monitor the long-term safety and effectiveness of the treatment asfotase alfa for those who receive it.

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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Contacts and locations

Locations

  • Leicester Royal Infirmary

    Leicester, Leicestershire, LE1 5WW, United Kingdom

  • Research Site

    Centennial, Colorado, 80112, United States

  • Research Site

    Hartford, Connecticut, 06106, United States

  • Research Site

    Tampa, Florida, 33606, United States

  • Research Site

    Decatur, Georgia, 30033, United States

  • Research Site

    Baltimore, Maryland, 21287, United States

  • Research Site

    Boston, Massachusetts, 02111, United States

  • Research Site

    Boston, Massachusetts, 02115, United States

  • Research Site

    Minneapolis, Minnesota, 55454, United States

  • Research Site

    Kansas City, Missouri, 64108, United States

  • Research Site

    St Louis, Missouri, 63110, United States

  • Research Site

    Hackensack, New Jersey, 07601, United States

  • Research Site

    Mineola, New York, 11501, United States

  • Research Site

    Durham, North Carolina, 27710, United States

  • Research Site

    Cincinnati, Ohio, 45229, United States

  • Research Site

    Columbus, Ohio, 43205, United States

  • Research Site

    Pittsburgh, Pennsylvania, 15224, United States

  • Research Site

    Nashville, Tennessee, 37212, United States

  • Research Site

    Salt Lake City, Utah, 84112, United States

  • Research Site

    Charlottesville, Virginia, 22903, United States

  • Research Site

    Madison, Wisconsin, 53792, United States

  • Research Site

    Clayton, Victoria, Australia

  • Research Site

    Parkville, Victoria, Australia

  • Research Site

    Herston, Australia

  • Research Site

    South Brisbane, Australia

  • Research Site

    Linz, Austria

  • Research Site

    Winnipeg, Manitoba, Canada

  • Research Site

    Oakville, Ontario, Canada

  • Research Site

    Ottawa, Ontario, Canada

  • Research Site

    Toronto, Ontario, M5G 2C4, Canada

  • Research Site

    Toulouse, Haute Garonne, France

  • Research Site

    Lille, Nord, France

  • Research Site

    Paris, Paris, France

  • Research Site

    Poitiers, Vienne, France

  • Research Site

    Lyon, France

  • Research Site

    Paris, France

  • Research Site

    Le Kremlin-Bicêtre, Île-de-France Region, France

  • Research Site

    Bad Reichenhall, Bavaria, Germany

  • Research Site

    Würzburg, Bavaria, Germany

  • Research Site

    Bochum, North Rhine-Westphalia, Germany

  • Research Site

    Düsseldorf, North Rhine-Westphalia, Germany

  • Research Site

    Dresden, Saxony, Germany

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    Berlin, Germany

  • Research Site

    Cologne, Germany

  • Research Site

    Giessen, Germany

  • Research Site

    Homburg, Germany

  • Research Site

    Mainz, Germany

  • Research Site

    Milan, Milano, 20132, Italy

  • Research Site

    Florence, Italy

  • Research Site

    Pisa, Italy

  • Research Site

    Rome, Italy

  • Research Site

    San Giovanni Rotondo, Italy

  • Research Site

    Lodz, Poland

  • Research Site

    Warsaw, Poland

  • Research Site

    Riyadh, Saudi Arabia

  • Research Site

    Madrid, Spain

  • Research Site

    Bristol, Avon, United Kingdom

  • Research Site

    London, Greater London, United Kingdom

  • Research Site

    Stanmore, Middlesex, United Kingdom

  • Research Site

    Oxford, Oxfordshire, United Kingdom

  • Research Site

    Sheffield, South Yorkshire, United Kingdom

  • Research Site

    Newcastle upon Tyne, Tyne & Wear, United Kingdom

  • Research Site

    Birmingham, West Midlands, United Kingdom

  • Research Site

    Belfast, United Kingdom

Conditions

Explore the condition pages connected to this study.