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National Registry of Rare Diseases



The National Registry of Rare Diseases was set up at the the Istituto Superiore di Sanità (ISS) in compliance with Art. 3 M.D. 279/2001.

The Registry has the aim of obtaining epidemiological information ( the number of cases of a given disease and the relative distribution on a national scale) useful in understanding the dimensions of the problem. The Registry also has the goal of defining the prevalence/incidence of rare diseases, identifying possible risk factors, supporting clinical research and fostering collaboration among healthcare providers toward the indication of diagnostic criteria.

" expand the window of observation of rare diseases :
the single case or partial aggregation of low-frequency events generally obtains less scientific...

Published 02-05-2008 in Registries , last update 06-27-2008 More...

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National Registry of Orphan Drugs

 The National Registry of Orphan Drugs contains data on the diagnosis and follow-up of the patients treated with orphan medicinal products authorized at a centralized level by the European Medicines Agency (EMEA) and reimbursed by the Italian National Health Service (NHS).

The National Registry of Orphan Medicinal Products, instituted at the Istituto Superiore di Sanità, prepares the data collection forms for each rare pathology and related medications, and collects, verifies and analyses the data sent by the regional Centres which are authorized to distribute these drugs.

This register aims at having total coverage of the national territory. This means that it will interact with all the Italian Centres that are authorized to dispense and prescribe orphan...

Published 02-05-2008 in Registries , last update 05-22-2008 More...

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Congenital Malformations Registers

 The Congenital Malformations Registers (CMR) are epidemiological structures able to guarantee the regular and complete registration of malformations in a specific geographical region. They are generally aimed at improving knowledge on these pathologies. A Congenital Malformation (CM) survey and surveillance program represent an original structure putting together a routine activity (gathering, filing, archiving and elaborating basic statistics) and a research activity.

In this way CMR activity allows to identify prevalence/incidence and fluctuations in time and space of CM and makes it possible to verify the effectiveness of the performed targeted preventive actions and health choices.

In this landscape CMR represent a useful instrument for health evaluation,...

Published 02-05-2008 in Registries , last update 07-25-2012 More...

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