Regional computerized network
for the optimization of the diagnosis, treatment and epidemiological analysis of rare diseases
The project for the creation of a Computerized Regional Network for the optimization of the diagnosis, treatment and epidemiological analysis of rare diseases was born in 2003 with the aim of creating a computerized information management network that allows both the collection of data on the number of cases of rare diseases (incidence and prevalence) in the Piedmont area and a wide dissemination of knowledge concerning rare diseases. The network is therefore aimed at patients and their families, patient associations, health professionals and all those interested in the topic of rare diseases.
Reasons and final objective of the program
The Regional Portal of Rare Diseases allows rapid access to information relating to individual rare diseases through the support of:
- information sheets;
- lists of care offers of Regional Health Agencies;
- report of the diagnostic-assistance activities of the Regional Health Agencies;
- shared diagnostic and therapeutic pathways.
All data will be updated in real time by dedicated personnel.
Criteria and indicators for verifying the final results achieved
We want to constantly verify the impact of the portal on clinical practice and on patients through questionnaires addressed to users.
The number of accesses to the site through appropriate meters will also be evaluated.