WHAT INFORMATION IS COLLECTED?
The Registry collects a wide range of information. For every new MFM implantation case, we register the gender, date of birth of the patient, the type and location of the aneurysm, where the treatment was carried out (country and hospital) the treatment received by the patient. Some of this information is input to the registry by full-time qualified registry employees from hospital medical records, but mostly by the treating physicians who are invited to input the data to the registry using a secure online database form. In cases where death occurs, we obtain the date and cause of death from the death certificate.
IS THE COLLECTED DATA CONFIDENTIAL?
The MFM global registry has a highly specialized medical team who treat acquired data very carefully. There are strict guidelines associated with who can see and use the registry data. Information is stored on encrypted computers with secure passwords which can not be inappropriately accessed. All information which could potentially identify an individual patient has been anonymised. Similarly when data is published in international journals, conferences or symposiums, all individual patient data is anonymised.