MurciaSalud

Patient-centered healthcare

The objective of the unit is to facilitate patients' access to diagnostic procedures and specific therapeutics related to hereditary heart diseases. These are considered rare diseases.

The unit centralizes specific assistance aimed not only at the diagnosis of the patient's illness index (or proband) but rather to the diagnosis of the disease in a family in an integrated manner. For this the Studies are mostly carried out centrally in the unit regardless of its area. reference health center or Spanish community of origin. Material and personal resources are available to serve the population currently valued annually in the unit.

There are 3 consultations for affected people and 3 weekly high-performance screening consultations. The capacity for clinical assessment + ECG + echocardiography at this time is 40 individuals per week.

Specific information is available on the pathologies defined by the network coordinators (hypertrophic, dilated, arrhythmogenic cardiomyopathy, long QT syndrome, Brugada syndrome, catecholaminergic polymorphic ventricular tachycardia).

Patients are extensively and specifically informed about their pathology, treatment and prognosis. Before carrying out any examination or intervention, patients must give their consent. signed. In addition to oral information, there is written information accessible online (link) and a corporate email for management of appointments and clarifications or doubts about diagnostic or therapeutic processes (cardiopatias.familiares.sms@carm.es)

The basic pillars of the unit from a professional point of view ensure its continuity. Services Mainly involved are: Clinical Cardiology specialized in Familial Heart Diseases, Imaging Cardiac, Pediatric cardiology, Cardiogenetics, Medical Genetics, Clinical Genetics, Cardiac Surgery, Cardiac Interventionism, Electrophysiological Unit, Pathological Anatomy and Forensic Pathology.

The team is made up of expert multidisciplinary personnel. Weekly meetings are held for discussion of cases and for clinical decision making in complex cases. All techniques are available collected as necessary in the specific CSUR report of the Ministry of Health and the European ERN network Guard-Heart of reference centers. Invasive techniques such as hemodynamic studies or electrophysiological. Our center has a heart transplant program with more than 20 years of experience.

Data is published on the website of updated activity, with respect to the different pathologies, as well as the results of the explorations carried out. The action protocols are standardized and are based on the guidelines of international clinical practice.

The clinical information and results of complementary tests (cardiological and genetic) remain stored anonymized in the hospital's electronic medical record, which is shared by others centers in the Region of Murcia and which can be accessed by the user from their home through the patient portal.