A patient registry collects information about patients who are affected by a particular condition.
This will happen through a database web-based that contains the information that researchers will need, clinical, genetic, follow-up,  side effect, for large studies involving patients from more than one country.



Any potential new treatment needs to be tested this allows researchers to ensure that all potential new therapies are both safe and effective.

A patient registry is a centralised database that collects medical informationabout medical care and health outcomes of a patient group.

Registries are especially useful in rare diseases, where often little is known about a condition. They pool patient data for basic and clinical research, cohort studies, and post-marketing observational studies. They can support health and social service planning by demonstrating specific patient need, as well as facilitating the creation of standards of care.

It has also been shown that registries increase the likelihood of treatment development, as companies are able to better understand the natural history of a condition and are facilitated in identifying patients for clinical trials.