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


  • Study type

  • Study IDs

  • Describes 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.
  • Site IRB
    • Rochester, Minnesota: 15-003679
    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. If you need assistance understanding the eligibility criteria, please contact the study team.

See eligibility criteria

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 us for help.

Mayo Clinic Location Status Contact

Rochester, Minn.

Mayo Clinic principal investigator

Peter Tebben, M.D.

Closed-enrolling by invitation

What is this? (?)
Not open to everyone who meets the eligibility criteria, but only those invited to participate by the study team.

Contact information:

Adriana Delgado CCRP