Registries can contribute to the understanding in any disease area, and they are particularly important for rare disorders such as HPP, where they provide a means to gather evidence and increase the collection of information. Participation of patients in the registry is critical to each registry’s success. For registries to be most useful, they need to include as many patients as possible.
The HPP Registry is open to all people with HPP, regardless of whether they are receiving treatment or not. The HPP Registry began 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 will be overseen by the Scientific Board of Advisors, 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.