All subjects must attend the local lipid clinic every 5 years for a medical examination and collection of blood samples. In addition, a standardized phone call is made every year to the subjects to collect information about any relevant change in health status, specifically changes in medication, life styles and new cardiovascular events occurring in the previous year.
Additionally, an active epidemiological surveillance system has been developed for the detection of fatal and non fatal cardiovascular events for subjects who can not be contacted. For non-fatal cardiovascular events, a summary of the hospital chart is gathered by physicians at the local lipid clinic and the event was classified according to WHO-MONICA criteria. Case adjudication is verified at the Coordinating Centre. For deaths, a copy of the death certificate is requested to the family and in the case that it is not available, it is requested to the National Statistic Institute. Causes of death are coded by a trained investigator using the International Classification of Diseases (9th edition).
In the case that the subject changes the address or region, CC-FHF will try to continue the annual telephone contact to the extent that the subjects report their new address.
The CC-FHF will encourage and maintain the participation of physicians and patients by providing them with annual information and feedback. In addition, a patient newsletter is sent to them, as well as posting it on the Fundación Hipercolesterolemia Familiar website (www.colesterolfamiliar.org).
Annual Follow-up Protocol (In Spanish)