Linking rare disease patient registries is one of the main objectives of the RD-Connect data linkage team.
Making registries FAIR will allow researchers to answer in a fast, automated way research questions such as: “Can registry data help measure the effect of the drug on the symptom severity?”, or “Does the precise disease-causing mutation influence the symptom severity?”
Sharing clinical information, such as description of symptoms and their severity in each patient, requires them to be stored in a standardised format. This is possible by using ontologies - hierarchically organised standardised terminology lists. Read more about ontologies >>