More research is essential if we are to improve our understanding of PHTS and develop better treatments. This can’t happen without the help of people with PHTS.
A patient registry is a database containing clinical information, systematically collected, about people who share a condition. For rare diseases, it is an essential tool to increase knowledge and understanding of the condition. Data in the registry can be used to map a condition’s natural history (how it progresses) and answer epidemiological questions such as who and how many people have it. This kind of data is required to draw up national and international health policy and care guidelines, and can be used to convince pharmaceutical companies to invest in the condition.
Currently, a number of institutional and national PHTS registries exist, or are planned that people with PHTS can sign up to.