Utrecht Cardiovascular Cohorts
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.
Why the initiatieve for Utrecht Cardiovascular Cohorts? uitklapper, klik om te openen
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.
Goals 2024 uitklapper, klik om te openen
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. The UCC initiative started with with three individual components, namely UCC-CVRM, UCC-SMART and UCC-LRGP. Yet, the ambition is over the year to expand UCC with several disease oriented cohorts. For 2023 initiatives are started to include the UCC-Athero-express and UCC-UNRAVEL.
Research opportunities uitklapper, klik om te openen
The UCC infrastructure is meant to improve care and enable the collection of data to address diagnostic, etiologic, prognostic and therapeutic clinical research questions.
The UCC comprises three parts. UCC-SMART comprises enrolment of all eligible CV patients in whom the same information will be collected, based on the Dutch cardiovascular management guideline. A sample of UCC-SMART participants will be invited for UCC-CVRM. UCC-CVRM involves an enrichment of UCC-SMART through extensive clinical measurements with emphasis on heart failure, cerebral ischemia, arterial aneurysms, diabetes mellitus and elevated blood pressure. UCC-LRGP comprises on-top studies, with in depth measurements in smaller groups of participants typically based on dedicated project grants. All UCC participants are followed up for morbidity and mortality through linkage with national registries.
UCC-PI Group uitklapper, klik om te openen
- Frank Visseren, PI UCC-SMART, Chairman
- Michiel Bots, PI UCC-CVRM
- Monika Hollander, PI UCC-LRGP
- Anneline te Riele, PI UCC-UNRAVEL
- Saskia Haitjema, Data management & UPOD
- Angela Vandersteen, Research coördinator UCC-SMART
- Charlotte Onland-Moret, Data management
- Marco Houterman, Program manager