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NCT02306720

Registry of Patients With Hypophosphatasia

Enrolling by Invitation
Not specifiedAll AgesObservational
Alexion Pharmaceuticals, Inc.
~1,571 participants
Updated 2026-02-27 on ClinicalTrials.gov

At a glance

Recruiting sites
0 of 64 listed sites are recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Natural History Information
Measured over 1 Year
+3 more outcomes measured

Conditions

Hypophosphatasia (HPP)

Explore related trials

HypophosphatasiaALPL Gene

Where it's being run

64 sites across 46 states
Germany5
Italy4
Ontario3
Massachusetts2
Missouri2
Ohio2
Victoria2
Australia2

Who to contact

This trial hasn't published a contact. View it on ClinicalTrials.gov

Do you actually qualify for this trial?

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Eligibility criteria

Inclusion

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

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

What this trial measures

  • Natural History Information1 Year

    To collect information on the natural history of HPP from patients of all ages, including pediatric patients and adults with HPP, regardless of age at onset.

  • Burden of Disease/Patient-reported Outcomes1 year

    Age-appropriate PRO data will be collected using instruments to asses below: Pain, Motor Capacity, Functional Status/Disability, including Activities of Daily Living (ADL), Quality of Life (QoL)

  • Characterize the epidemiology of the HPP population.1 year

    To characterize the epidemiology of the HPP population. Inclusion of all classifications of HPP is planned: pediatric-onset (perinatal-, infantile-, and juvenile-onset), adult-onset, benign perinatal, and odontohypophosphatasia.

  • Long-Term Safety and Effectiveness of Asfotase Alfa1 year

    To collect and evaluate long-term safety and effectiveness data in HPP patients who have/are receiving treatment with asfotase alfa.