Advantages and disadvantages with a registry in heart failure
Advantages
and disadvantages
with a registry in heart failure
Jean-No?l Trochu
Institut du Thorax
CHU de Nantes
France
Agenda
?
?
Definition
Advantages:
?
?
?
Disadvantages
?
?
?
Descriptive registries in HF
Quality improvement registries in HF
Think about alternatives
Registry versus RCT
Conclusion
Definition
?
?
Organized programme for the collection, storage,
retrieval, and dissemination of clearly defined set of data
collected on identifiable individuals for a specific and
specified purpose
Systematic data collection programme:
?
?
?
functioning in patient management or research
standardized, and complete dataset including associated FU
Different types of patient registries:
?
prospectively and systematically collected for a group of patients
with a common disease or therapeutic intervention
Chronic disease-specific,
syndrome, condition
Richesson R, Vehik K. Adv Exper Med Biol 2010;6:87
Therapeutic
(exposure, device, surgical tt)
Peripheral applications of
registries
?
Difference between the registry per se and the
applications of a registry:
?
?
peripheral applications make use of registry data but are not
required to create a registry
¡°Good¡± registry should function as a clinical
support system:
?
registries should provide data as feedback to physicians
submitting information to the dataset
Drolet BC. J Biomed Informatics 41 (2008) 1009¨C1020
Advantages of registries in HF
?
1/ Focus on pt management and the use of treatment
guidelines
?
?
Rapidly collect data in large numbers of pts
cross sectional views of multiple clinical and demographic aspects
?
?
?
repeated sample provides a dynamic estimate of the changing patterns
of the disease
evaluate how therapies impact outcomes
2/ Improve quality of care
?
?
?
?
using physician/pt reminder systems / algorithm to improve
FU and care
information on the physician¡¯s adherence to guidelines, pts¡¯
outcomes
compare their own population and therapeutic strategies with that of
other clinicians, or the aggregate dataset
=> participating to a registry have an important impact on medical
practice / conventional continuous medical education
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