The ‘Netherlands ACM Registry’ is a project of the Netherlands Heart Institute. This organization, which was founded in 1972, aims to conduct scientific research on heart diseases by combining the strength of all 8 teaching hospitals in the Netherlands.
The ‘Netherlands ACM Registry’ is a large national project that is coordinated by cardiologists and geneticists who have been appointed to the Netherlands Heart Institute. Like the academic hospitals, we are a non-profit organisation and our research depends on donations and scholarships from, among others, the Dutch Heart Foundation, ZonMW, the Royal Dutch Academy of Sciences, and the European Union. Our register aims to develop more knowledge in the field of disease causes, heredity, diagnosis and treatment of arrhythmogenic cardiomyopathy. In addition, we want to communicate this knowledge to as many physicians, patients and other interested parties as possible.
For more information about us and about our team, please contact us.
Dr. Peter van Tintelen is clinical geneticist at the UMC in Utrecht and coordinator of the Netherlands ACM Registry. He received his doctorate in 2008 on the hereditary causes of ACM, and has since been active in ACM research. His main interest is in expanding the knowledge of hereditary causes (genes and mutations) of ACM; but he also concentrates on matters that can change the manifestation of the disease (such as doing sports). His function at the Netherlands ACM Registry is to coordinate the project at the organizational level (especially in the field of genetics). In addition, he supervises several PhD students in this area.
Dr. Anneline te Riele is a cardiologist in training at UMC Utrecht and coordinator of the Netherlands ACM Registry. She has more than 5 years of experience in ACM research, obtained her doctorate on this subject, and has worked in the United States for several years with ACM experts at Johns Hopkins Hospital in Baltimore. With her international background she tries to strengthen the results of her research through good cooperation. Her main interest is in (family) screening, diagnostics, and better assessment of the risk of sudden cardiac death in ACM patients. Her job at the Netherlands ACM Registry is to coordinate the project at the organizational level (especially in the field of cardiology). In addition, she supervises several PhD students in this area.
Prof. Dr. Richard Hauer is emeritus professor in clinical electrophysiology, working at the Netherlands Heart Institute and founder of the Netherlands ACM Registry. After his training as a cardiologist in Amsterdam, his interest in cardiac arrhythmias brought him to the Krannert Institute in Indianapolis in the United States, where he was trained in clinical electrophysiology. In 1983 he introduced the electrical catheter ablation in the Netherlands (disabling the place of origin of a cardiac arrhythmia by means of a catheter) and in 1984 the implantable cardioverter defibrillator (ICD) for the prevention of sudden cardiac death. In the ACM study, his focus is mainly on early diagnosis through the detection of abnormalities on the electrocardiogram. In 2000 he set up the first version of the ACM Registry, which started as a local project in Utrecht, but soon grew under his leadership into a national project in 2006. In 2012 he retired as a professor at UMC Utrecht, but he is still active at the Netherlands Heart Institute and functions as coordinator of the ACM Registry at organizational level.
Prof. Dr. Folkert Asselbergs is a cardiologist and Professor of Cardiovascular Genetics at UMC Utrecht. Prof. dr. Asselbergs obtained his doctorate at the University of Groningen in 2005 and did a fellowship at Harvard University and Dartmouth Medical College in the United States to further develop in epidemiology, cardiogenetics and bioinformatics. His main scientific interest is to find genetic causes and risk factors for heart muscle disease. His function at the Netherlands ACM Registry is to coordinate the data storage (at organizational level). In addition, he is the scientific manager of the Durrer Center (part of the Netherlands Heart Institute), and he supervises a number of PhD students in the field of hereditary heart disease.
Drs. Laurens Bosman is a PhD student at the Netherlands Heart Institute and executive coordinator of the Netherlands ACM Registry. After receiving his Bachelor degree in Biomedical Science he trained as a medical doctor and clinical researcher (SUMMA) at UMC Utrecht. After his graduation he started his PhD training in 2016 under the supervision of Prof. dr. Asselbergs. His research focus is on early diagnosis and risk stratification in ACM, for which he did a research fellowship at the Johns Hopkins Institute supervised by Dr. Hugh Calkins and Dr. Cynthia James. He is also in training as a clinical epidemiologist at the Julius Center in Utrecht. His function at the Netherlands ACM Registry is to coordinate patient inclusions and input data at executive level (in the field of cardiology).
Drs. Freyja van Lint is a PhD student at the Department of Clinical Genetics at the AMC. In 2017 she started her research in the field of ACM. The focus of her research is mainly on the variable development and disease course of hereditary heart diseases. Her function within the Netherlands ACM Registry is the executive coordination of the project (in the field of genetics).
In addition to the researchers from the Netherlands Heart Institute, numerous doctors and researchers from various hospitals in the Netherlands are also involved, including:
(note: the list is not yet complete and will be further supplemented)
Prof. Dr. Arthur Wilde, cardiologist, AMC Amsterdam
Prof. Dr. Bert van Rossum, cardiologist, VUMC Amsterdam
Prof. Dr. Maarten van den Berg, cardiologist, UMC Groningen
Prof. Dr. Katja Zeppenfeld, cardiologist, LUMC Leiden
Prof. Dr. Birgitta Velthuis, radiologist, UMC Utrecht
Prof. Dr. Paul Volders, cardiologist, MUMC + Maastricht
Dr. Dennis Dooijes, laboratory specialist clinical genetics, UMC Utrecht
Dr. Toon van Veen, medical physiology, UMC Utrecht
Dr. Maarten-Jan Cramer, cardiologist, UMC Utrecht
Dr. Jeroen van der Heijden, cardiologist, UMC Utrecht
Dr. Peter Loh, cardiologist, UMC Utrecht
Dr. Paul van der Zwaag, clinical geneticist, UMC Groningen
Dr. Sing Yap, cardiologist, Erasmus MC Rotterdam
Dr. Thomas Mast, cardiologist in training, UMC Utrecht
Dr. Moniek Cox, cardiologist, UMC Utrecht
Dr. Arco Teske, cardiologist, UMC Utrecht
Dr. Judith Groeneweg, cardiologist in training, UMC Utrecht
Dr. Wouter te Rijdt, clinical geneticist in training, UMC Groningen
Drs. Edgar Hoorntje, PhD student clinical genetics, UMC Groningen
Drs. Mimount Bourfiss, PhD student cardiology, UMC Utrecht
Drs. Tom Verstraelen, PhD student cardiology, AMC Amsterdam
Drs. Rob Roudijk, PhD student cardiology, UMC Utrecht
Drs. Jarieke Hoogendoorn, PhD student cardiology LUMC Leiden
Drs. Karim Taha, PhD student cardiology UMC Utrecht
Drs. Feddo Kirkels, PhD student cardiology UMC Utrecht