Registry of Patients With Hypophosphatasia

Last updated: May 13, 2025
Sponsor: Alexion Pharmaceuticals, Inc.
Overall Status: Active - Enrolling

Phase

N/A

Condition

N/A

Treatment

N/A

Clinical Study ID

NCT02306720
ALX-HPP-501
  • All Genders

Study Summary

In this prospective, observational, long term registry patients of all ages with a diagnosis of hypophosphatasia (HPP) are followed at participating sites in multiple countries.

Eligibility Criteria

Inclusion

Inclusion Criteria:

  • Male and female participants, of any age, with a confirmed diagnosis of HPP.

  • Participant must have documented alkaline phosphatase (ALP) activity below the lowerlimit of normal for age and sex, or a documented ALPL gene mutation.

  • Participant or legal representative is able to read and/or understand the informedconsent and study questionnaires in the local language.

  • Signed informed consent and medical records release by the patient or legalrepresentative. Patient or patient's parent/legal representative must be willing andable to give written informed consent, and the patient must be willing to givewritten informed assent, if appropriate and required by local regulations.

Exclusion

Exclusion Criteria:

  • Currently participating in an Alexion-sponsored clinical trial. Enrollment in theRegistry will not exclude a patient from enrolling in a future clinical trial.

Study Design

Total Participants: 900
Study Start date:
April 02, 2017
Estimated Completion Date:
December 31, 2031

Study Description

The HPP Registry is an observational, prospective, long-term registry designed to collect data on HPP epidemiology, disease history, clinical course, symptoms and burden of disease from patients of all ages who have a diagnosis of HPP.

Evaluation of safety and effectiveness data in patients with HPP who have/are receiving treatment with Asfotase alfa

Connect with a study center

  • Research Site

    Westmead, New South Wales
    Australia

    Site Not Available

  • Westmead, New South Wales
    Australia

    Site Not Available

  • Research Site

    Clayton, Victoria
    Australia

    Site Not Available

  • Clayton, Victoria
    Australia

    Site Not Available

  • Research Site

    Parkville, Victoria
    Australia

    Site Not Available

  • Parkville, Victoria
    Australia

    Site Not Available

  • Research Site

    Herston,
    Australia

    Site Not Available

  • Herston,
    Australia

    Site Not Available

  • Research Site

    South Brisbane,
    Australia

    Site Not Available

  • South Brisbane,
    Australia

    Site Not Available

  • Research Site

    Linz,
    Austria

    Site Not Available

  • Research Site

    Winnipeg, Manitoba
    Canada

    Site Not Available

  • Winnipeg, Manitoba
    Canada

    Site Not Available

  • Research Site

    Oakville, Ontario
    Canada

    Site Not Available

  • Research Site

    Ottawa, Ontario
    Canada

    Site Not Available

  • Research Site

    Toronto, Ontario M5G 2C4
    Canada

    Site Not Available

  • Research Site

    Toulouse, Haute Garonne
    France

    Site Not Available

  • Toulouse, Haute Garonne
    France

    Site Not Available

  • Research Site

    Toulouse cedex 9, Haute Garonne
    France

    Site Not Available

  • Research Site

    Lille Cedex, Nord
    France

    Site Not Available

  • Research Site

    Paris cedex 14, Paris
    France

    Site Not Available

  • Paris cedex 14, Paris
    France

    Site Not Available

  • Research Site

    Poitiers cedex, Vienne
    France

    Site Not Available

  • Research Site

    Le Kremlin-Bicêtre, Île-de-France
    France

    Site Not Available

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

    Site Not Available

  • Research Site

    Lyon,
    France

    Site Not Available

  • Lyon,
    France

    Site Not Available

  • Research Site

    Paris,
    France

    Site Not Available

  • Research Site

    Bad Reichenhall, Bayern
    Germany

    Site Not Available

  • Bad Reichenhall, Bayern
    Germany

    Site Not Available

  • Research Site

    Wuerzburg, Bayern
    Germany

    Site Not Available

  • Research Site

    Würzburg, Bayern
    Germany

    Site Not Available

  • Würzburg, Bayern
    Germany

    Site Not Available

  • Research Site

    Bochum, Nordrhein Westfalen
    Germany

    Site Not Available

  • Bochum, Nordrhein Westfalen
    Germany

    Site Not Available

  • Research Site

    Düsseldorf, Nordrhein Westfalen
    Germany

    Site Not Available

  • Düsseldorf, Nordrhein Westfalen
    Germany

    Site Not Available

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    Essen, Nordrhein-Westfalen
    Germany

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  • Research Site

    Dresden, Sachsen
    Germany

    Site Not Available

  • Dresden, Sachsen
    Germany

    Site Not Available

  • Research Site

    Berlin,
    Germany

    Site Not Available

  • Berlin,
    Germany

    Site Not Available

  • Research Site

    Giessen,
    Germany

    Site Not Available

  • Giessen,
    Germany

    Site Not Available

  • Research Site

    Hamburg,
    Germany

    Site Not Available

  • Hamburg,
    Germany

    Site Not Available

  • Research Site

    Homburg,
    Germany

    Site Not Available

  • Homburg,
    Germany

    Site Not Available

  • Research Site

    Koeln,
    Germany

    Site Not Available

  • Koeln,
    Germany

    Site Not Available

  • Research Site

    Mainz,
    Germany

    Site Not Available

  • Mainz,
    Germany

    Site Not Available

  • Research Site

    Muenchen,
    Germany

    Site Not Available

  • Muenchen,
    Germany

    Site Not Available

  • Research Site

    Müllheim,
    Germany

    Site Not Available

  • Müllheim,
    Germany

    Site Not Available

  • Research Site

    Rostock,
    Germany

    Site Not Available

  • Rostock,
    Germany

    Site Not Available

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    Dublin,
    Ireland

    Site Not Available

  • Research Site

    Milan, Milano 20132
    Italy

    Site Not Available

  • Research Site

    Firenze,
    Italy

    Site Not Available

  • Firenze,
    Italy

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    Genova,
    Italy

    Site Not Available

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    Milano,
    Italy

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  • Research Site

    Pisa,
    Italy

    Site Not Available

  • Pisa,
    Italy

    Site Not Available

  • Research Site

    Rome,
    Italy

    Site Not Available

  • Rome,
    Italy

    Site Not Available

  • Research Site

    San Giovanni Rotondo,
    Italy

    Site Not Available

  • San Giovanni Rotondo,
    Italy

    Site Not Available

  • Research Site

    Verona,
    Italy

    Site Not Available

  • Verona,
    Italy

    Site Not Available

  • Research Site

    Lodz,
    Poland

    Site Not Available

  • Research Site

    Warsaw,
    Poland

    Site Not Available

  • Warsaw,
    Poland

    Site Not Available

  • Research Site

    Warszawa,
    Poland

    Site Not Available

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    Lisboa,
    Portugal

    Site Not Available

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    Kurgan,
    Russian Federation

    Site Not Available

  • Research Site

    Moscow,
    Russian Federation

    Site Not Available

  • Moscow,
    Russian Federation

    Site Not Available

  • Research Site

    Saint Petersburg,
    Russian Federation

    Site Not Available

  • Saint Petersburg,
    Russian Federation

    Site Not Available

  • Research Site

    Riyadh,
    Saudi Arabia

    Site Not Available

  • Riyadh,
    Saudi Arabia

    Site Not Available

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    Granollers, Barcelona
    Spain

    Site Not Available

  • Research Site

    Barcelona,
    Spain

    Site Not Available

  • Barcelona,
    Spain

    Site Not Available

  • Research Site

    Madrid,
    Spain

    Site Not Available

  • Madrid,
    Spain

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    Móstoles,
    Spain

    Site Not Available

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    Palma,
    Spain

    Site Not Available

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    Pamplona,
    Spain

    Site Not Available

  • Research Site

    Bristol, Avon
    United Kingdom

    Site Not Available

  • Bristol, Avon
    United Kingdom

    Site Not Available

  • Research Site

    London, Greater London
    United Kingdom

    Site Not Available

  • Research Site

    Leicester, Leicestershire
    United Kingdom

    Site Not Available

  • Research Site

    Stanmore, Middlesex
    United Kingdom

    Site Not Available

  • Research Site

    Oxford, Oxfordshire
    United Kingdom

    Site Not Available

  • Research Site

    Sheffield, South Yorkshire
    United Kingdom

    Site Not Available

  • Research Site

    Dundee, Tayside Region
    United Kingdom

    Site Not Available

  • Research Site

    Newcastle upon Tyne, Tyne & Wear
    United Kingdom

    Site Not Available

  • Research Site

    Birmingham, West Midlands
    United Kingdom

    Site Not Available

  • Research Site

    Belfast,
    United Kingdom

    Site Not Available

  • Belfast,
    United Kingdom

    Site Not Available

  • Birmingham,
    United Kingdom

    Site Not Available

  • Dundee,
    United Kingdom

    Site Not Available

  • Leicester,
    United Kingdom

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  • London,
    United Kingdom

    Site Not Available

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    Manchester,
    United Kingdom

    Site Not Available

  • Newcastle upon Tyne,
    United Kingdom

    Site Not Available

  • Research Site

    Newport,
    United Kingdom

    Site Not Available

  • Newport,
    United Kingdom

    Site Not Available

  • Research Site

    Norwich,
    United Kingdom

    Site Not Available

  • Norwich,
    United Kingdom

    Site Not Available

  • Oxford,
    United Kingdom

    Site Not Available

  • Sheffield,
    United Kingdom

    Site Not Available

  • Stanmore,
    United Kingdom

    Site Not Available

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    West Midlands,
    United Kingdom

    Site Not Available

  • Research Site

    Little Rock, Arkansas 72202
    United States

    Site Not Available

  • Little Rock, Arkansas 72202
    United States

    Site Not Available

  • Research Site

    Centennial, Colorado 80112
    United States

    Site Not Available

  • Centennial, Colorado 80112
    United States

    Site Not Available

  • Research Site

    Golden, Colorado 80401
    United States

    Site Not Available

  • Golden, Colorado 80401
    United States

    Site Not Available

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    Lakewood, Colorado
    United States

    Site Not Available

  • Research Site

    Hartford, Connecticut 06106
    United States

    Site Not Available

  • Hartford, Connecticut 06106
    United States

    Site Not Available

  • Research Site

    Tampa, Florida 33606
    United States

    Site Not Available

  • Tampa, Florida 33606
    United States

    Site Not Available

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    Atlanta, Georgia
    United States

    Site Not Available

  • Research Site

    Decatur, Georgia 30033
    United States

    Site Not Available

  • Decatur, Georgia 30033
    United States

    Site Not Available

  • Research Site

    Chicago, Illinois 60611
    United States

    Site Not Available

  • Chicago, Illinois 60611
    United States

    Site Not Available

  • Research Site

    Baltimore, Maryland 21287
    United States

    Site Not Available

  • Baltimore, Maryland 21287
    United States

    Site Not Available

  • Research Site

    Boston, Massachusetts 02111
    United States

    Site Not Available

  • Boston, Massachusetts 02111
    United States

    Site Not Available

  • Research Site

    Minneapolis, Minnesota 55454
    United States

    Site Not Available

  • Research Site

    Kansas City, Missouri 64108
    United States

    Site Not Available

  • Kansas City, Missouri 64108
    United States

    Site Not Available

  • Research Site

    Saint Louis, Missouri 63110
    United States

    Site Not Available

  • Saint Louis, Missouri 63110
    United States

    Site Not Available

  • Research Site

    Hackensack, New Jersey 07601
    United States

    Site Not Available

  • Research Site

    Mineola, New York 11501
    United States

    Site Not Available

  • Mineola, New York 11501
    United States

    Site Not Available

  • Research Site

    Rochester, New York 14642
    United States

    Site Not Available

  • Rochester, New York 14642
    United States

    Site Not Available

  • Research Site

    Syracuse, New York 13214
    United States

    Site Not Available

  • Syracuse, New York 13214
    United States

    Site Not Available

  • Research Site

    Durham, North Carolina 27710
    United States

    Site Not Available

  • Durham, North Carolina 27710
    United States

    Site Not Available

  • Research Site

    Cincinnati, Ohio 45229
    United States

    Site Not Available

  • Cincinnati, Ohio 45229
    United States

    Site Not Available

  • Research Site

    Columbus, Ohio 43205
    United States

    Site Not Available

  • Columbus, Ohio 43205
    United States

    Site Not Available

  • Research Site

    Pittsburgh, Pennsylvania 15224
    United States

    Site Not Available

  • Pittsburgh, Pennsylvania 15224
    United States

    Site Not Available

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    Providence, Rhode Island 02903
    United States

    Site Not Available

  • Research Site

    Nashville, Tennessee 37212
    United States

    Site Not Available

  • Nashville, Tennessee 37212
    United States

    Site Not Available

  • Research Site

    Salt Lake City, Utah 84112
    United States

    Site Not Available

  • Salt Lake City, Utah 84112
    United States

    Site Not Available

  • Research Site

    Charlottesville, Virginia 22903
    United States

    Site Not Available

  • Research Site

    Madison, Wisconsin 53792
    United States

    Site Not Available

  • Madison, Wisconsin 53792
    United States

    Site Not Available

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