The Hypophosphatasia (HPP) Alexion Registry was initiated in 2015 and aims to improve the care of patients with HPP by improving understanding and awareness of HPP. The HPP Registry is an observational, longitudinal, multinational long-term study that will collect important data on the progression of an ultra-rare disease, HPP, regardless of treatment. It is designed to collect anonymized data on epidemiology, HPP history, clinical course, symptoms (including multi-systemic aspects of disease), and burden of disease from patients of all ages who have a diagnosis of HPP.
The HPP Registry is open for enrollment to all patients with a diagnosis of HPP. Participants in the Registry volunteer to share on anonymized basis their medical information to help healthcare professionals better understand the disease and its management. The HPP Registry data is collected by the patient’s doctor as part of the doctor’s routine medical practice, which means a patient does not have to undergo any additional visits or any experimental procedures in connection with the registry.
The anonymous data collected in the registry is analyzed by physicians with extensive scientific and clinical expertise in this area. Analyses of information gathered in the registry will lead to a better understanding of HPP, which in turn, will increase awareness, aid diagnosis, and improve patient care.
The HPP Registry Study is open for additional Investigator Sites to participate. For more information about participation in the HPP Registry Study please contact: HPPRegistryStudy@quintiles.com