Utrecht Cardiovascular Cohorts (UCCs) is a ‘federation’ of cardiovascular cohorts with the main focus to uniform data collection in routine clinical practice in cardiovascular patients and dedicated targeted data collection in designated patient groups (disease cohorts) for optimal care, quality control and research.
Patients with increased risk of cardiovascular disease (CVD), or those with symptoms potentially related to presence of cardiovascular abnormalities are commonly referred to various specialists, including cardiologists, endocrinologists, geriatricians, nephrologists, neurologists, internists, or vascular surgeons. Guidelines exist as to what should be recorded as a minimum in those patients. Yet, compliance to these recommendation varies considerably across specialties even in academic and teaching hospitals. Still too often, each specialty collects a specific set of patient data, depending on signs and symptoms and the suspected condition. Furthermore, definitions and coding of data vary and where information is in the electronic patient records shows marked variability. In specialist care, patients are followed only if the condition demands repeat hospital visits. If it does not, patients return to the referring physician in another hospital or their general practitioner.
Complete short and long term follow-up information is of major importance to determine quality and outcome of care but is often lacking.
To advance the knowledge on diagnosis, etiology, prognosis and treatment in designated specific cardiovascular condition, targeted data collection is needed in addition to routine clinical information.
It is well established that a steady flow of reliable data collected in routine clinical practice and in targeted approaches are the lifeblood of a continuous learning health care system A learning healthcare system is one designed to generate and apply the best evidence for the collaborative healthcare choices of each patient and provider; to drive the process of discovery as a natural outgrowth of patient care; and to ensure innovation, quality, safety, and value in health care. This type of data (i.e., routine clinical, targeted, and follow-up) is needed to coordinate and monitor patient care, analyze and improve systems of care and its quality, conduct scientific research to develop new products and approaches, assess the effectiveness of medical interventions, and advance population health.
To optimize the integration of research and clinical care the UCC was introduced in 2013. Since beginning the UCC team has worked on establishing the appropriate conditions and inclusion pathways for establishing this cohort. Utrecht Cardiovascular Cohorts (UCCs) nowadays is a ‘federation’ of cardiovascular cohorts with the main focus to uniform data collection in routine clinical practice in cardiovascular patients and dedicated targeted data collection in designated patient groups (disease cohorts) for optimal care, quality control and research.
The UCC initiative currently has four components, namely UCC-CVRM, UCC-SMART, UCC-UNRAVEL and UCC-LRGP.
The Utrecht Cardiovascular Cohorts – Second Manifestations of Arterial Disease (UCC-SMART) study is an ongoing prospective single-centre cohort study of over 15,000 patients.
The UCC-CVRM component aims to provide care to all new cardiovascular patients in accordance with the Dutch Cardio-Vascular Risk Management (CVRM) guideline.
UNRAVEL is a research platform that aims to identify factors involved in penetrance, variability, and risk stratification of heart diseases as a whole, with a focus on inherited cardiomyopathies.
UCC-LRGP is an initiative started in 2019 involving a phenotypic enrichment of age and sex specific sample of 1,000 recent participants of the Utrecht Health Project.
The UCC infrastructure is meant to improve care and enable the collection of data to address diagnostic, etiologic, prognostic and therapeutic clinical research questions. All UCC participants are followed up for morbidity and mortality through linkage with national registries. The UCC comprises four parts.