Current management of transition and multidisciplinary care of patients with inherited and rare cardiomyopathies in Europe: results of the European Reference Network for rare and low prevalence complex diseases of the heart
Inherited and rare heart muscle diseases (called cardiomyopathies) often begin in childhood and require lifelong care from different kinds of doctors. As children with these conditions grow up, they need to move from pediatric (childrens´ doctors) care to adult care – a process known as “transition.” If this transition is not handled properly, it can lead to serious health problems.
This study looked at how expert heart centres across Europe manage this transition, and whether they work together in teams of different specialists (called multidisciplinary care). Doctors from 26 expert centres in 12 countries were asked about how they care for patients with these rare heart diseases.
The results showed that although most centres have a plan for transitioning young patients to adult care, many use it only in selected cases, and some have no formal plan at all. Almost all centres work in multidisciplinary teams, but some important team members are often missing.
The study highlights that care for these patients is very different depending on where they are treated. To improve outcomes, healthcare systems need clearer guidelines, more teamwork among healthcare professionals, and more training in the genetic aspects of heart diseases.
Monda E, Biagini E, Blom N, Drago F, Krapels I, Krebsová A, Koubsky K, Khraiche D, Martins E, Merlo M, Michels M, Mizia-Stec K, Mörner S, Peña Peña ML, Planinc I, Robyns T, Rydberg A, Saenen J, Rodríguez Palomares JF, Rutger H, Sarquella Brugada G, Scheirlynck E, Schulze-Bahr E, Tfelt-Hansen J, Wolf CM, Hofman N, Amin AS, Wilde A, Charron P, Limongelli G. Current Management of Transition and Multidisciplinary Care of Patients with Inherited and Rare Cardiomyopathies in Europe: Results of the European Reference Network for Rare and Low Prevalence Complex Diseases of the Heart (ERN GUARD-HEART).
Eur Heart J Qual Care Clin Outcomes. 2025 Jul 11:qcaf055. doi: 10.1093/ehjqcco/qcaf055. Online ahead of print. PMID: 40643001
Prepared by Giuseppe Limongelli and Ruth Biller