A Study to Create a Registry of Patients with Hypophosphatasia (HPP)

Overview

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

Participating Mayo Clinic locations

Study statuses change often. Please contact the study team for the most up-to-date information regarding possible participation.

Mayo Clinic Location Status Contact

Rochester, Minn.

Mayo Clinic principal investigator

Peter Tebben

Closed for enrollment

Contact information:

Adriana Delgado

(507) 284-4430

Delgado.Adriana@mayo.edu

More information

Publications

Publications are currently not available