Overview
Acronym
RIFC
Type of information
Registry data
URL of the data source
Description
The RIFC was one of the first national registries in the world for Cystic fibrosis: established in 1988 by some pediatricians in order to collect clinical data of Italian patients diagnosed with cystic fibrosis to carry out an epidemiological characterization of the disease in our country. When the Registry started in January 1988, demographic and clinical data of all prevailing cases were entered into the database, and from that time until 2004 all incident cases were added.
Governance and legal framework
Formal agreement with the Istituto Superiore di Sanità-ISS
Funding
Public funding
Free keywords
Genetic diseases
Topics
Health status » Morbidity/disability » Non-communicable diseases
Demographics
Country(ies):
GEO coverage
Nuts 1
Target Population
General population
Age range
From 0 years
Sex
Both
Dataset
Data Collection Period
From 01 January 1988 - Ongoing
Language(s)
Italian
Updating Periodicity
Annually
Personal Identifier
Participant number
Level of aggregation
Individual
Terms of data access - URL
Terms of data access
Avaibility based on a specific request and on payment of specific fees.
Contact
Data Owner(s)
Istituto Superiore di Sanità-ISS
Contact name
Domenica Taruscio
Contact e-mail
domenica.taruscio@iss.it
Contact info (address)
Centro Nazionale Malattie Rare, Istituto Superiore di Sanità, Via Giano della Bella 34, 00161, Rome, Italy
Updated on 02 February 2023