Registry of Patients With Hypophosphatasia

Last updated: September 10, 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: 1571
Study Start date:
January 20, 2015
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

    Clayton 2171400, Victoria 2145234
    Australia

    Site Not Available

  • Research Site

    Parkville 2153770, Victoria 2145234
    Australia

    Site Not Available

  • Research Site

    Herston,
    Australia

    Site Not Available

  • Herston,
    Australia

    Site Not Available

  • Research Site

    Herston 6931014,
    Australia

    Site Not Available

  • Research Site

    South Brisbane,
    Australia

    Site Not Available

  • South Brisbane,
    Australia

    Site Not Available

  • Research Site

    South Brisbane 2207259,
    Australia

    Site Not Available

  • Research Site

    Linz,
    Austria

    Site Not Available

  • Research Site

    Linz 2772400,
    Austria

    Site Not Available

  • Research Site

    Winnipeg, Manitoba
    Canada

    Site Not Available

  • Winnipeg, Manitoba
    Canada

    Site Not Available

  • Research Site

    Winnipeg 6183235, Manitoba 6065171
    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

    Oakville 6092122, Ontario 6093943
    Canada

    Site Not Available

  • Research Site

    Ottawa 6094817, Ontario 6093943
    Canada

    Site Not Available

  • Research Site

    Toronto 6167865, Ontario 6093943 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 2972315, Haute Garonne
    France

    Site Not Available

  • Research Site

    Toulouse cedex 9, Haute Garonne
    France

    Site Not Available

  • Research Site

    Lille 2998324, Nord
    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 2986495, Vienne
    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

    Le Kremlin-Bicêtre 3003737, Île-de-France Region 3012874
    France

    Site Not Available

  • Research Site

    Lyon,
    France

    Site Not Available

  • Lyon,
    France

    Site Not Available

  • Research Site

    Lyon 2996944,
    France

    Site Not Available

  • Research Site

    Paris,
    France

    Site Not Available

  • Research Site

    Paris 2988507,
    France

    Site Not Available

  • Research Site

    Bad Reichenhall 2953371, Bavaria 2951839
    Germany

    Site Not Available

  • Research Site

    Würzburg 2805615, Bavaria 2951839
    Germany

    Site Not Available

  • Research Site

    Bad Reichenhall, Bayern
    Germany

    Site Not Available

  • Bad Reichenhall, Bayern
    Germany

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    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

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    Düsseldorf, Nordrhein Westfalen
    Germany

    Site Not Available

  • Düsseldorf, Nordrhein Westfalen
    Germany

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    Essen, Nordrhein-Westfalen
    Germany

    Site Not Available

  • Research Site

    Bochum 2947416, North Rhine-Westphalia 2861876
    Germany

    Site Not Available

  • Research Site

    Düsseldorf 2934246, North Rhine-Westphalia 2861876
    Germany

    Site Not Available

  • Research Site

    Dresden, Sachsen
    Germany

    Site Not Available

  • Dresden, Sachsen
    Germany

    Site Not Available

  • Research Site

    Dresden 2935022, Saxony 2842566
    Germany

    Site Not Available

  • Research Site

    Berlin,
    Germany

    Site Not Available

  • Berlin,
    Germany

    Site Not Available

  • Research Site

    Berlin 2950159,
    Germany

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  • Research Site

    Cologne 2886242,
    Germany

    Site Not Available

  • Research Site

    Giessen,
    Germany

    Site Not Available

  • Giessen,
    Germany

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  • Research Site

    Giessen 2920512,
    Germany

    Site Not Available

  • Research Site

    Hamburg,
    Germany

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  • Hamburg,
    Germany

    Site Not Available

  • Research Site

    Homburg,
    Germany

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  • Homburg,
    Germany

    Site Not Available

  • Research Site

    Homburg 2899449,
    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

    Mainz 2874225,
    Germany

    Site Not Available

  • Research Site

    Muenchen,
    Germany

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  • Muenchen,
    Germany

    Site Not Available

  • Research Site

    Müllheim,
    Germany

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  • Müllheim,
    Germany

    Site Not Available

  • Research Site

    Rostock,
    Germany

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  • Rostock,
    Germany

    Site Not Available

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    Dublin,
    Ireland

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  • Research Site

    Milan, Milano 20132
    Italy

    Site Not Available

  • Research Site

    Milan 3173435, Milano 20132
    Italy

    Site Not Available

  • Research Site

    Firenze,
    Italy

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  • Firenze,
    Italy

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  • Research Site

    Florence 3176959,
    Italy

    Site Not Available

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    Genova,
    Italy

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    Milano,
    Italy

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  • Research Site

    Pisa,
    Italy

    Site Not Available

  • Pisa,
    Italy

    Site Not Available

  • Research Site

    Pisa 3170647,
    Italy

    Site Not Available

  • Research Site

    Rome,
    Italy

    Site Not Available

  • Rome,
    Italy

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  • Research Site

    Rome 3169070,
    Italy

    Site Not Available

  • Research Site

    San Giovanni Rotondo,
    Italy

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  • San Giovanni Rotondo,
    Italy

    Site Not Available

  • Research Site

    San Giovanni Rotondo 3168234,
    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

    Lodz 3093133,
    Poland

    Site Not Available

  • Research Site

    Warsaw,
    Poland

    Site Not Available

  • Warsaw,
    Poland

    Site Not Available

  • Research Site

    Warsaw 756135,
    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

  • Research Site

    Riyadh 108410,
    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

    Site Not Available

  • Research Site

    Madrid 3117735,
    Spain

    Site Not Available

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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

    Bristol 2654675, Avon
    United Kingdom

    Site Not Available

  • Research Site

    London, Greater London
    United Kingdom

    Site Not Available

  • Research Site

    London 2643743, Greater London
    United Kingdom

    Site Not Available

  • Research Site

    Leicester, Leicestershire
    United Kingdom

    Site Not Available

  • Research Site

    Leicester 2644668, Leicestershire
    United Kingdom

    Site Not Available

  • Research Site

    Stanmore, Middlesex
    United Kingdom

    Site Not Available

  • Research Site

    Stanmore 2637063, Middlesex
    United Kingdom

    Site Not Available

  • Research Site

    Oxford, Oxfordshire
    United Kingdom

    Site Not Available

  • Research Site

    Oxford 2640729, Oxfordshire
    United Kingdom

    Site Not Available

  • Research Site

    Sheffield, South Yorkshire
    United Kingdom

    Site Not Available

  • Research Site

    Sheffield 2638077, South Yorkshire
    United Kingdom

    Site Not Available

  • Research Site

    Dundee, Tayside Region
    United Kingdom

    Site Not Available

  • Research Site

    Dundee 2650752, Tayside Region
    United Kingdom

    Site Not Available

  • Research Site

    Newcastle upon Tyne, Tyne & Wear
    United Kingdom

    Site Not Available

  • Research Site

    Newcastle upon Tyne 2641673, Tyne & Wear
    United Kingdom

    Site Not Available

  • Research Site

    Birmingham, West Midlands
    United Kingdom

    Site Not Available

  • Research Site

    Birmingham 2655603, West Midlands
    United Kingdom

    Site Not Available

  • Research Site

    Belfast,
    United Kingdom

    Site Not Available

  • Belfast,
    United Kingdom

    Site Not Available

  • Research Site

    Belfast 2655984,
    United Kingdom

    Site Not Available

  • Birmingham,
    United Kingdom

    Site Not Available

  • Dundee,
    United Kingdom

    Site Not Available

  • Leicester,
    United Kingdom

    Site Not Available

  • 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

    Centennial 5416541, Colorado 5417618 80112
    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

    Hartford 4835797, Connecticut 4831725 06106
    United States

    Site Not Available

  • Research Site

    Tampa, Florida 33606
    United States

    Site Not Available

  • Tampa, Florida 33606
    United States

    Site Not Available

  • Research Site

    Tampa 4174757, Florida 4155751 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

    Decatur 4191124, Georgia 4197000 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

    Baltimore 4347778, Maryland 4361885 21287
    United States

    Site Not Available

  • Research Site

    Boston, Massachusetts 02115
    United States

    Site Not Available

  • Boston, Massachusetts 02111
    United States

    Site Not Available

  • Research Site

    Boston 4930956, Massachusetts 6254926 02115
    United States

    Site Not Available

  • Research Site

    Minneapolis, Minnesota 55454
    United States

    Site Not Available

  • Research Site

    Minneapolis 5037649, Minnesota 5037779 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

    Kansas City 4393217, Missouri 4398678 64108
    United States

    Site Not Available

  • Research Site

    St Louis 4407066, Missouri 4398678 63110
    United States

    Site Not Available

  • Research Site

    Hackensack, New Jersey 07601
    United States

    Site Not Available

  • Research Site

    Hackensack 5098706, New Jersey 5101760 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

    Mineola 5127134, New York 5128638 11501
    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

    Durham 4464368, North Carolina 4482348 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

    Cincinnati 4508722, Ohio 5165418 45229
    United States

    Site Not Available

  • Research Site

    Columbus 4509177, Ohio 5165418 43205
    United States

    Site Not Available

  • Research Site

    Pittsburgh, Pennsylvania 15224
    United States

    Site Not Available

  • Pittsburgh, Pennsylvania 15224
    United States

    Site Not Available

  • Research Site

    Pittsburgh 5206379, Pennsylvania 6254927 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

    Nashville 4644585, Tennessee 4662168 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

    Salt Lake City 5780993, Utah 5549030 84112
    United States

    Site Not Available

  • Research Site

    Charlottesville, Virginia 22903
    United States

    Site Not Available

  • Research Site

    Charlottesville 4752031, Virginia 6254928 22903
    United States

    Site Not Available

  • Research Site

    Madison, Wisconsin 53792
    United States

    Site Not Available

  • Madison, Wisconsin 53792
    United States

    Site Not Available

  • Research Site

    Madison 5261457, Wisconsin 5279468 53792
    United States

    Site Not Available

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