Mathis, S. and Wild, C. (2008): [Clinical and health economic registries in the field of cardiovascular, spinal and neurologic diseases. Methods and good practice strategies]. HTA-Projektbericht 11.
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Background: The increasing demand for a better understanding of the health care system and ways to its improvement resulted into a diversification on the method of epidemiological registries. In regard to this additional registries developed in clinical fields with variable methodology and goals. Additional factors for an increasing usage of registries are improved information technologies and the need for information for policy making in health care. The application of registries was therefore extended from population based coverage to other areas. Different application fields, definitions, questions and methods of existing registries complicate the question, where registries can be applied effectively and what factors would be critical to a successful implementation. This implies also the question, how registries can produce scientifically accepted information that is also useful for health policy making.
Policy and Research Question of assessment: Questions of this assessment are (1) in what fields are registries recently additionally applied, (2) what kind of questions are processed in these registries and (3) what are the factors that make a registry work efficiently and what is needed to make them producing scientific valuable and health political relevant results.
Method: For each sub question different methods were used. A systematic literature search and a complementary search discovered active registries in selected medical fields by publications resulting from these registries. An iterative deductive method was applied to generate a scheme to characterise registries. With these scheme types of questions in registries can and have been systematically assessed. A second systematic literature search was performed to identify good practice strategies for the work with registries.
Results: The results are presented in three parts:
1.) The results from the systematic identification process for active registries in the cardiovascular, neurological and spine-related field are 42 registries that are presented in the report in tabular view and in a database.
2.) A scheme for the characterisation of registries was developed. A description of 4 cases of registries helped to demonstrate the scheme and to deepen the knowledge about questions and the organisation of the cases.
3.) In about 250 citations in methodological and reflexive publications about registries were compacted to form good practice strategies for the work with registries. Also a category system evolved.
Discussion: The analysis of application fields of registries confirmed their usage for differential observations of the gap between experimental research and real life application. This can be interpreted as an increased need for in-formation about the health care system. For the work within registries various biometrical and epidemiological methods can be applied and these methods are described plentiful in the technical literature for registries. A scientific design is recommended in registries and can improve the significance of the results. Beside recommendations regarding the scientific design plenty advices could be identified in the area of information processing and project management. Risks in performing registries to be considered concern data privacy and protection aspects and the need for (often underestimated) complex statistical analyses of the registry’s data. An important aspect is also the strategy for dissemination. Many recommendations to connect the results tightly to feedback channels into the related health area implicate, that results of registries are often not sufficiently considered in health policy decisions. A methodology for the evaluation of the quality of the evidence from registries - as it is needed in Health Technology Assessment - is rudimentary available.
- Registries can be seen as a reaction to the expanded information needs about the health care system
- Registries are used increasingly in the field of quality work, in initiatives of specialists and initiatives to connect research and real life application
- Registries can be seen as a complementary tool to clinical studies
- Data security aspects and complex statistical analyses are resource critical aspects of registry ventures
- Prerequisites should be arranged in a way that registry results are able to act as feedback to the system
- Methodological knowledge from classical study designs and biometrical methods can enhance the significance of the evidence from a registry
- For the assessment of the quality of the evidence from registries rudimentary methodological guidance is available.
|Item Type:||Project Report|
|Keywords:||Register, registry, good practice strategies, cardiovascular diseases, spine, neurological diseases, methods, implementation|
|Subjects:||WB Practice of medicine > WB 102 Evidence-based medicine|
W Health professions > W 26 Health informatics
WA Public health > WA 105 Epidemiology
|Deposited on:||30 Jun 2008 11:40|
|Last Modified:||27 Feb 2009 12:52|
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- [Clinical and health economic registries in the field of cardiovascular, spinal and neurologic diseases. Methods and good practice strategies] (deposited 27 May 2008 17:18)
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