Utrecht Cardiovascular Cohort
The Utrecht Cardiovascular Cohort: Uniform data collection in routine clinical practice in cardiovascular patients for optimal care, quality control and research
UCC 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. It is well established that a steady flow of reliable data collected in routine clinical practice 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.
Data are 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.
Center for Circulatory Health
The UCC represents a biobanking cohort with the purpose of generating a similar and exchangeable dataset and biomaterials from all cardiovascular patients treated in the UMC Utrecht. 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 has three components, namely UCC-CVRM, UCC-SMART and UCC-LRGP, and is integrated within the UMC Utrecht strategic program Circulatory Health.
The UCC-CVRM component aims to provide care to all new cardiovascular patients in accordance with the Dutch Cardio-Vascular Risk Management (CVRM) guideline. At the end of 2018 4,140 patients participated in the cohort. Sixty percent of the participating patients in UCC have given permission for participation in scientific research and for extra blood collection for the biobank. From 90% of this group information is received via questionnaires and measurements. All the required data for almost 80% is present (complete CVRM lab). Obviously there is a commitment to complete the data in the database. The UCC-CVRM database is in 2018 enriched with routine care data of general practitioners and the Pharmaceutical Key Figures Foundation (medication prescriptions).
In the UCC-SMART section, additional measurements are offered to 800 very high-risk patients from the UCC-CVRM group with the aim to improve the care of patients with cardiovascular disease in the future. Since 2018 UCC-SMART is a combination of UCC with the SMART cohort that has been running for 22 years, with data from 13,300 patients of which 10,096 are still actively participating in the annual follow-up.
UCC-LRGP (LRGP = “Leidsche Rijn GezondheidsProject”): UCC-Utrecht Health Project is an initiative that will start in 2019 involving a phenotypic enrichment of age and sex specific sample of 1000 recent participants of the Utrecht Health Project. The enrichment closely follows what is measured in UCC-SMART so that we expand the distribution of cardiovascular risk and phenotyping across the whole population, from general population to symptomatic patients referred to a tertiary hospital. The enrichment includes imaging of the heart, the abdomen, the carotid arteries, and additional questionnaire on cognition, dietary intake, physical activity, medication, and several blood measurements. The areas we cover are heart failure, abdominal aneurysms, carotid stenosis, and atrial fibrillation.
The Utrecht Cardiovascular Cohort (UCC) as a starting point for optimisation of patient care, quality control and research (Asselbergs FW, Visseren FL, Bots ML, et al. Uniform data collection in routine clinical practice in cardiovascular patients for optimal care, quality control and research. The Utrecht Cardiovascular Cohort. Eur J Prev Cardiol. 2017;24(8):840-847).
Before you can make the request, you must register at EDUgroepen.
After registering, please send an email to UCC data request (firstname.lastname@example.org) notifying the administrator of the data request module that you are registered at EDUgroepen. In this email, please include the email address that you used to register. When the email is received, the administrator will send you an invite which grants you access to the data request module.
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.
Research team (steering committee)
Michiel Bots, epidemiology, chairman,
Folkert Asselbergs, cardiology
Gert Jan de Borst, vascular surgery
Jan Dieleman, anaesthesiology
Baukje van Dinther, project manager
Mariëlle Emmelot-Vonk, geriatrics
Imo Hoefer, laboratory
Monika Hollander, general practice
Pim de Jong, radiology
Titia Lely, gynecology
Ynte Ruigrok, neurology
Marianne Verhaar, nephrology
Frank Visseren, vascular medicine
Baukje van Dinther, project manager UCC
Michiel Bots, chairman UCC steering committee