Registry of Patients With Hypophosphatasia

Enrolling by invitation

Conditions studied: Hypophosphatasia (HPP)

In brief

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.

Key facts

Study ID

NCT02306720

Run by

Alexion Pharmaceuticals, Inc.

People needed

1571

Starts

2015-01-20

Expected to finish

2031-12-31

Last updated by the study team

2026-02-27

Who can join

Age: any. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• 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.

You may not qualify if…

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

Where it is running

• Research Site — Hartford, Connecticut, United States
• Research Site — Tampa, Florida, United States
• Research Site — Decatur, Georgia, United States
• Research Site — Baltimore, Maryland, United States
• Research Site — Boston, Massachusetts, United States
• Research Site — Boston, Massachusetts, United States
• Research Site — Minneapolis, Minnesota, United States
• Research Site — Kansas City, Missouri, United States
• Research Site — St Louis, Missouri, United States
• Research Site — Hackensack, New Jersey, United States
• Research Site — Mineola, New York, United States
• Research Site — Durham, North Carolina, United States
• Research Site — Cincinnati, Ohio, United States
• Research Site — Columbus, Ohio, United States
• Research Site — Pittsburgh, Pennsylvania, United States
• Research Site — Nashville, Tennessee, United States
• Research Site — Salt Lake City, Utah, United States
• Research Site — Charlottesville, Virginia, United States
• Research Site — Madison, Wisconsin, 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 — Centennial, Colorado, United States

Full record on ClinicalTrials.gov

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