Our registries collect information that is routinely recorded when you visit your doctor. They are defined as observational studies, so there is no treatment or procedures involved that you would not be receiving as per your usual treatment. These kinds of data collected include your diagnosis, genetics, weights, heights and other kinds of demographic data, test results, health complications, medicines and treatments, hospitalisations, healthcare services use and information about how the condition and treatments have an impact on you. Your quality of life is generally collected by a patient survey.