Den här översättningen är inte klar ännu. Den här sidan är just nu på engelska.

Gå till den engelska sidan

Cure My Disease

Don't miss your cure!

 Log in / Sign up

New registry aims to unlock secrets of rare bone disease HPP

NCT ID NCT02306720

Knowledge-focused Sponsor: Alexion Pharmaceuticals, Inc. Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only This study
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 27, 2026 · Last updated Sep 04, 2026 · Updated 1 time

Summary

This long-term study follows over 1,500 people of all ages with hypophosphatasia (HPP), a rare bone disease. Researchers will collect information on how the disease progresses, its impact on daily life, and the long-term safety and effectiveness of the treatment asfotase alfa. The goal is to better understand HPP and improve care for patients.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 1,571 people

The number the study aims to enrol. It can still change while the study runs.

Started

Jan 2015

Expected to finish

Dec 2031

An estimate. End dates often move.

Lead sponsor

A company

The lead sponsor is a pharmaceutical, biotech, or medical-device company.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Patients with Hypophosphatasia (HPP)

Ages

Children (under 18), adults (18 to 64) and older adults (65 and over)

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

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 lower limit of normal for age and sex, or a documented ALPL gene mutation. * Participant or legal representative is able to read and/or understand the informed consent and study questionnaires in the local language. * Signed informed consent and medical records release by the patient or legal representative. Patient or patient's parent/legal representative must be willing and able to give written informed consent, and the patient must be willing to give written informed assent, if appropriate and required by local regulations. Exclusion Criteria: * Currently participating in an Alexion-sponsored clinical trial. Enrollment in the Registry will not exclude a patient from enrolling in a future clinical trial.

Get updates

Get notified about this study

Sign up to get updates when this study changes or when new studies for Hypophosphatasia (HPP) are added.

Vår säkerhetsrekommendation!

Genom att skicka in godkänner du våra Användarvillkor

Conditions

The condition(s) this trial relates to.

hypophosphatasia

As listed by the trial registrant

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

Hypophosphatasia (HPP)

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    64 sites in 11 countries. The list below names each one and where it is.

  2. The official record

    The full official record for this study. This one lists no contact details, but it is the first place any would appear.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Study site

    Santander, 681003, Colombia

  • Study site

    Sesto Fiorentino, Firenze, Italy

  • 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

  • Research Site

    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

More trials for these conditions

Other studies related to the condition(s) this trial covers.