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Annals of Oncology Advance Access published online on September 12, 2005
Annals of Oncology, doi:10.1093/annonc/mdi402
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© 2005 European Society for Medical Oncology
Received December 30, 2004
Revised July 27, 2005
Accepted August 2, 2005

Original article

More information, more choice: an Italian database for oncology patients

A. Bogliolo 1*, W. Russell-Edu 2, G. Alloro 1, R. Ballarini 3, G. Bocchini 1, L. Cecere 4, A. Codonesu 3, G. Cognetti 4, M. Montella 5, R. Ricci 6, P. Seroppi 6, A. Trocino 5, R. Truffelli 1, F. Cognetti 4, and I. Truccolo 6

1 National Cancer Research Institute (IST), Genoa, Italy
2 European Institute of Oncology, Milan, Italy
3 National Cancer Institute, Milan, Italy
4 Regina Elena Cancer Institute, Rome, Italy
5 National Cancer Institute, Naples, Italy
6 National Cancer Institute, Oncology Referral Centre, Aviano, Italy

* To whom correspondence should be addressed.
A. Bogliolo, E-mail: anna.bogliolo{at}istge.it


  Abstract

Background: In recent years there has been a proliferation of cancer information available for patients in the Italian language. However, quantity without validation and organization is by no means synonymous with providing good information and a good service. Furthermore, the lack of coordination and cooperation between the various information-providing initiatives results in uncontrolled waste.

Materials and methods: To impose order on the vast ocean of cancer information in Italian, and to provide patients with a reliable and comprehensive tool, the Azalea Project was developed whereby a database of information for patients was created. Paper-based and electronic information is validated and stored so that patients can search and retrieve it. Validation is by means of a grid drawn up by the project team with reference to international standards.

Results: The nucleus of the database constructed by the Centro di Riferimento Oncologico (Oncology Referral Centre), Aviano, was extended using the wide experience of the Italian Cancer Institutes within the Italian Alliance Against Cancer. The website is at http://www.azaleaweb.it

Conclusions: Meetings and courses specially designed for the project enabled evaluation grids to be created and permitted a fruitful interchange of skills and experience from a variety of professional information providers united in the common aim of providing patients with a service that meets their needs and puts them in control at a difficult time in their lives.

Keywords: databases; Internet; neoplasms; patient education; popular works.
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