What is the ‘Netherlands ACM Registry’?
Over the past decades, researchers have made a lot of progress in understanding ACM. For example, the discovery of the fact that specific DNA mutations can cause ACM. This knowledge gave insight in the development of ACM and made it possible to screen family members of patients for the risk on developing ACM.
In daily clinical practice the risk of ACM development can vary between family members. Moreover, the risk of heart rhythm abnormalities varies largely between patients. This makes is hard to recognize ACM in the early disease stages, and to assess the risk on the development of arrhythmias or heart failure.
By improving risk prediction strategies and increasing the knowledge about ACM, both doctors and patients can make better decisions on treatment and life style interventions for individual patients. We need more research to help answer these questions. For example, we can do this by studying and comparing the medical records of patients with ACM in detail. Unfortunately, this kind of research is difficult in ACM because of the rarity of the disease.
To overcome this problem, we started the ‘Netherlands ACM Registry’. Basically, all patients and all their family members can be included in this registry. Because, a larger database can answer more difficult questions about ACM. The goal of this registry is a large nationwide database of ACM patients and by doing so, improving the quality of ACM research. Good collaboration between doctors, scientists, patients and family members is the only way to make this registry a success. We can only do this on the following conditions:
1. By a standardized and safe (your privacy is very important to us) way to collect and store medical records of participating patients and family members in a national database. This will help us in conducting research in a safer and faster manner. Also, this will improve the impact of our research by increasing the number of included patients.
2. By giving the participants the opportunity stay informed about the research projects and the research results. Furthermore, patients participating in the registry can notify the researchers if they want to participate in other clinical ACM research projects.