The revolution in information technology has transformed the processes of collection, transmission, analysis, and storage of data, leading to the improvement of many large-scale systematic data-collection systems of health-related events. Familial adenomatous polyposis (FAP) represents a paradigmatic example of how the establishment of a data-collection system, starting from family tracing and evolving to more complex registration processes, increases knowledge on different aspects of the disease and ultimately can influence patients' clinical management and professionals'attitudes. Many years have passed since the establishment of the first polyposis registry at St Mark's Hospital in London. An historical overview of FAP registries is presented, discussing potentials and limitations of population-based registries versus clinical registries. In the context of recently developed health policies on rare diseases, the experience of a registry monitoring FAP as well as other rare conditions, population-based, and at the same time with features of a clinical one, is presented. The value of FAP registries relies on their ability to provide a snap-shot of aspects of disease as well as of its management, producing evidence and translating this into clinical practice. Our belief is that such registries, really patient-centered, should be developed as an integral part of the healthcare network, becoming connecting informative tools between vertical networks, namely centers of expertise, horizontal care networks, and other institutions and persons involved in the care of FAP patients.

The role of a Registry in Familial Adenomatous Polyposis

MAZZUCATO, MONICA;MANEA, SILVIA;FACCHIN, PAOLA
2008

Abstract

The revolution in information technology has transformed the processes of collection, transmission, analysis, and storage of data, leading to the improvement of many large-scale systematic data-collection systems of health-related events. Familial adenomatous polyposis (FAP) represents a paradigmatic example of how the establishment of a data-collection system, starting from family tracing and evolving to more complex registration processes, increases knowledge on different aspects of the disease and ultimately can influence patients' clinical management and professionals'attitudes. Many years have passed since the establishment of the first polyposis registry at St Mark's Hospital in London. An historical overview of FAP registries is presented, discussing potentials and limitations of population-based registries versus clinical registries. In the context of recently developed health policies on rare diseases, the experience of a registry monitoring FAP as well as other rare conditions, population-based, and at the same time with features of a clinical one, is presented. The value of FAP registries relies on their ability to provide a snap-shot of aspects of disease as well as of its management, producing evidence and translating this into clinical practice. Our belief is that such registries, really patient-centered, should be developed as an integral part of the healthcare network, becoming connecting informative tools between vertical networks, namely centers of expertise, horizontal care networks, and other institutions and persons involved in the care of FAP patients.
Intestinal Polyps and Polyposis. From Genetics to Treatment and Follow-up
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Utilizza questo identificativo per citare o creare un link a questo documento: http://hdl.handle.net/11577/2271043
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