The Italian National ART Register

Abstract

On February 19th 2004 in Italy was promulgate a law that regulates all assisted reproduction techniques (ART) ( * ). In this law is established the creation of the National ART Register (Registro Nazionale della Procreazione Medicalmente Assistita) at the National Institute of Health (Istituto Superiore di Sanita, ISS). The National Health Institute prepares an annual report to the Ministry of Health, with all the data from the ART clinics operating in Italy. Sending data to the Register is mandatory. The aims of the Register are: list all the authorized structures that apply ART techniques in Italy, collect and diffuse transparent information of these techniques and the results of their application. Diffuse the correct information to all citizens and infertile couples in particular on reproductive health, prevention of infertility and possible therapeutic interventions. The Register data collection is made on a specific web site ( www.iss.it/rpma ) create to allow ART clinics to complete and send out the annual summary data reports “on-line”. Each clinic has an username and a password that consent them the access to a private zone in this web site where they can communicate with the Italian National ART register. Actual law requires The Register to collect information also on children born after ART procedures. Actually all the ART clinics have big problems to recruit such kind of data, because not all the couples let them know if their treatments have been successfully. The data covering treatments and births starts during a specific year. The data are usually available two years after the end of the treatment period. The summaries of each clinic contain data regarding: number of ART procedures, pregnancies and deliveries by ART procedure including standard IVF, ICSI, FIVET, GIFT and FER; the number of cycles started, number of oocyte aspirations and of embryo transfers; abortions an ectopic pregnancies; the number of live born children; the number of IVF treatments, reported per ART procedure, the indications for treatment and women's age (in five year intervals); the number of embryo replaced per procedure. Data collection take place twice a year: the first data collection regards ART treatments results and the other one for data regarding surveillance of children born after ART procedures. The Italian Register cooperate with other 29 countries sending data to the eim European IVF Monitoring. The European data collection is made once a year from all the participating countries and the results are published after two years. In addition, the Italian ART Register is trying to build up a report system of individual cycle data. As a matter of fact it was created a specific software freely distribute among ART clinics to consent them the collection of individual cycle data and to administrate their own patients flow. Unfortunately the national privacy protection authorities (“Garante della Privacy”) until today has not gave the permission to collect this kind of data.