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.
Registries are also used to find people who might want to take part in clinical trials and to collect data on how people respond to treatments. In some registries, patients can get involved in the development, management and maintenance of the database.
In short, by signing up to a registry, you can directly contribute to accelerating progress towards a targeted treatment and improved outcomes for people with PHTS.
When you sign up to a patient registry, you or your doctor may provide information such as your medical history, diagnosis, symptoms and any treatment that you have had. In return, you are typically kept informed of developments relating to your condition. In particular, you could:
To protect people’s privacy, information in the registry might be anonymised - any information that could identify an individual is removed. But because this can cause problems when data is pooled or cross-referenced with other sources of epidemiological information, pseudonymisation is sometimes preferred. In this case, a trusted third party replaces any identifying data with artificial placeholders or pseudonyms. Only they have access to the information needed to ‘decode’ the pseudonymised data and reconnect a patient’s medical information to their identity.
However, even if the database is anonymised, it may still be possible to identify who the data comes from, by cross-checking medical history against other sources of accessible personal data, for example. This is especially the case where there are relatively few people with a condition.
Ultimately, the decision of whether to sign up to a registry is a personal one. You have to decide how concerned you are about the potential privacy issues or whether you think they are outweighed by the benefits of an increased understanding of PHTS.
Currently, a number of institutional and national PHTS registries exist, or are planned that people with PHTS can sign up to.
If you know of any other registries that you would like to have mentioned on our website please contact us.