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Registries play an important role in helping researchers and doctors better understand diseases. For rare conditions like hypophosphatasia (HPP), registries are especially valuable because they allow for the collection of real-world data that may not otherwise be available. By participating, you help contribute to research that could improve care and treatment for people living with HPP. The more participants who join, the more complete and useful the registry becomes.

The HPP Registry is open to individuals with HPP who are seen at participating clinical sites, regardless of whether they are currently receiving treatment. The HPP Registry was initiated in 2014 with the first patient enrolled in 2015 to help better understand HPP and its management.

HPP is a rare inherited disease, therefore if you are diagnosed with HPP, there is a chance that other members of your family have it too.

By collecting information of people with HPP in a central database, research can be conducted on a larger patient group than would otherwise be possible, so we may learn things that will enable better care for patients in the future. Research using the Registry’s data is overseen by the Scientific Advisory Board, a group of physicians with experience in HPP. The advisors regularly review the registry information, and have presented registry results at medical conferences.

With the help of patients with HPP, together we can improve the lives of those with HPP now and in the future.