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ALX-HPP-501: An Observational,Longitudinal Prospective, Long-term Registry of Patients with Hypophosphatasia

Status: Recruiting

This is a long-term registry is designed to collect data on hypophosphatasia (HPP) to better understand the condition and learn more about the disease, how patients feel about living with HPP and effect of HPP on the patients wellbeing and health. The study will look at participant’s medical records and health questionnaires about the health status of patients. This study collects observational data from clinical care and does not involve any treatment for HPP or administration of medication for HPP.

I'm interested

Age: Not specified
Healthy Volunteers:
This study is NOT accepting healthy volunteers
Inclusion Criteria:

• confirmed diagnosis of HPP.
• documented alkaline phosphatase (ALP) activity below the lower limit of normal for age and sex, or a documented ALPL gene mutation.
• able to read and speak English
Exclusion Criteria:

• currently participating in an Alexion-sponsored clinical trial
Conditions:

Rare Diseases

Keywords:

HPP, Hypophosphatasia

Contact(s): Kyriakie Sarafoglou - saraf010@umn.edu
Principal Investigator: Kyriakie Sarafoglou
IRB Number: STUDY00004936
System ID: 22992
See this study on ClinicalTrials.gov

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