A Study to Create a Registry of Patients with Hypophosphatasia (HPP)
Overview
Tab Title Description
Study type
ObservationalDescribes the nature of a clinical study. Types include:
- Observational study — observes people and measures outcomes without affecting results.
- Interventional study (clinical trial) — studies new tests, treatments, drugs, surgical procedures or devices.
- Medical records research — uses historical information collected from medical records of large groups of people to study how diseases progress and which treatments and surgeries work best.
Study IDs
NCT ID: NCT02306720
Sponsor Protocol Number: ALX-HPP-501
About this study
The purpose of this study is to collect information on the variability, progression, and natural history of hypophosphotasia (HPP) from patients of all ages, including infants, children, and adults with HPP, regardless of age at onset.
Participation eligibility
Participant eligibility includes age, gender, type and stage of disease, and previous treatments or health concerns. Guidelines differ from study to study, and identify who can or cannot participate. There is no guarantee that every individual who qualifies and wants to participate in a trial will be enrolled. Contact the study team to discuss study eligibility and potential participation.
Inclusion Criteria
- Male and female patients
- Any age
- Confirmed diagnosis of HPP
- Patient 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
- Previously received asfotase alfa
- Enrollment in the Registry will not exclude a patient from enrolling in a future clinical trial
More information
Publications
Publications are currently not available