About

The first meeting of the Nordic ARVC Register was held in Copenhagen on June 18th, 2009. The vision was that, individually, all the Nordic countries had relatively few patients with this rare disease but if efforts were joined into a common register, the number of patients available for research would increase substantially. The participants could then potentially gain a deeper knowledge about the disease and answer clinically relevant research questions, and eventually improve the diagnosis, treatment and prognosis for the benefit of the patients.

After the first meeting, a web-based register was established ny means of a generous research grant from Medtronic that covered startup activities. The ongoing routine register activities have been covered by individual research grants acknowledged in the publications.

Two annual registry meetings have been held. At these meetings, research projects are discussed, approved, and progression is secured.

The research from the register covers challenging issues related to ARVC diagnosis and genetics, ECG findings in ARVC, how patients tolerate pregnancy and delivery, ICD treatment in ARVC, catheter ablation, and the need for heart transplantation.

During 2022, the “old” register will be migrated into a REDCap register.