The Registry is made up of Clinician Reported Data and Patient Reported Data.
Clinician Reported Data is added when a patient gives their consent for their clinician to share their anonymous medical data, including demographic data, biochemical and genetic testing results, symptoms and treatments from the patient’s first visit and follow-up appointments.
Patient Reported Data is added directly by the patient. It is collected through a questionnaire that asks quality of life questions to capture the wider disease impact.
Both types of data are still incredibly useful in progressing research, treatment and care even if they are added in isolation but they are likely to have greater impact if both types are added for a patient.