The procedure for including patients is as follows. First, the patient’s physician/cardiologist provides information regarding the CONCOR project, explains its nature and goals, and asks whether the patient would be willing to participate. After the patient has given informed consent, the patient’s clinical data are entered into the data base. Data entry is done by research nurses who have been specially trained. Data are entered on-line at a local terminal and sent to a central database via a secure internet connection.

Informed consent is given separately for inclusion in the registry and for DNA analysis. Hence, also patients who not wish to provide a blood sample for DNA analysis may be included in the registry.

After the patient has given oral and written permission, two samples of blood are taken. If a research nurse is available during the visit to the outpatient clinic, venipuncture for withdrawal of blood may be done immediately, if the patient wishes. Otherwise, an appointment may be made for blood withdrawal at another time. After blood collection, the samples are delivered at the laboratory for DNA diagnostics of the department of clinical genetics of the Academic Medical Center. There, DNA is isolated and stored.