Establishment of an Australian National Genetic Heart Disease Registry

Overview of how the National Genetic Heart Disease Registry will function. (A) At enrolment, clinical and genetic data are collected and stored in the Registry database. (B) The Registry may periodically make contact with a registrant to update data, provide educational material and advise of research programs. (C) Regular interaction between cardiologists, clinical genetics units, general practitioners (GP) and patient support groups is necessary. (D) Research groups are able to use the cohort following Registry Advisory Committee and local HREC approval, and the Registry will approach eligible participants on the group's behalf.

Governance Structure of the National Genetic Heart Disease Registry. The Registry Advisory Committee oversees all major decisions relating to the Registry. The Registry Coordinator reports to the Advisory Committee and coordinates the day-to-day functioning of the Registry. Sites currently recruiting are RPAH and RBWH. Both Melbourne sites are expected to begin recruiting in 2008. Additional recruitment sites are anticipated in the future. Abbreviations: RPAH=Royal Prince Alfred Hospital, Sydney; RBWH=Royal Brisbane and Women's Hospital, Brisbane; RCH VIC=Royal Children's Hospital, Melbourne; RMH=Royal Melbourne Hospital, Melbourne.