HIV Clinical Research Database

ICONA is one of the most important and effective institutions in the context of epidemiological and clinical research in HIV and hepatitis virus infections. ICONA is operating since 1997 within a national Network designed to collect clinical data and selected biological materials; it stands apart as one of the few cohorts in the world capable of supplying reliable data on the impact of initial treatments on epidemiological, clinical, biological and behavioural parameters.

In 25 years ICONA has enrolled more than 20 thousand antiretroviral naïve patients at the beginning of the observational period, and it has gathered an huge volume of highly valuable information about natural history and outcome of HIV and hepatitis virus infections.

In 2010 the Foundation was struggling with the application managing its scientific database, mainly due to its maintenance costs (approximately €40K per year) and to its lack of flexibility (weeks for even small changes in the database schema).

The Data Manager of the Foundation (who had no professional experience in software development) managed to reimplement the existing legacy application with the Livebase platform in a few weeks, migrating data, extending the database schema and introducing new features.

After a few months of testing, ICONA dismissed the old system relying entirely on the new Livebase-generated system. The application is now used daily by over 80 hospitals across Italy, allowing each hospital to view and manage only clinical data related to the patients under its jurisdiction, while allowing ICONA researchers to have a global view and calculate statistics on the entire data set.

The information managed includes patients’ profile (age, sex, genomic sequences, genotypes and related methods, markers, mutations), history (pathologies and hospitalizations), events and behaviours (life style, risk factors, causes of death), clinical tests (neuropsychologist tests, biological samples, test tubes and their uses) and therapies (starting and ending motivations, medications and their components).

Thanks to Livebase, ICONA has achieved a 60% reduction of the maintenance costs of the application, and it has empowered its own data manager to change the database schema, application views and user profiles autonomously and in a matter of hours.