The catalogue of French health databases 'Epidémiologie France Portal' has doubled in size over the past year. The index now contains detailed descriptions of 650 databases, reports Inserm (Institut thématique Santé Publique) the Paris-based organisation that is managing the portal.
"We are continuing to extend the domain and the quality of the information that we collect", says Marie Lhosmot, project manager at the organisation. "The health database portal is updated regularly, and Inserm will continue to take care of its maintenance."
Inserm is working on implementing the Data Documentation Initiative standard on the portal. The website is now also almost completely bilingual, in French and English. "We will have translated the remaining 20 percent of the site into English by the end of the year", Dr Lhosmot said.
Most of the data-banks that were added in the past year are the cohort studies, gathered by IRESP (Institut de Recherche en Santé Publique). IRESP's Epigramme collected most of the available cohort studies on health. The Epigramme databases were moved to the portal Epidemiology-France in August last year.
The Portal Epidémiologie France (French health and epidemiology databases) was launched in May 2011. It is one of the programs set up by Aviesan - the French National Alliance for Life Sciences and Health. The portal is financed by both France's Ministry of Economy and the country's Pharmaceutical Companies Association.
The portal lists French health databases that are likely to be useful for the development of research and expertise in public health. It does not provide access to the actual data: the organisations hope to encourage new research by listing keys characteristics, such as the database' objectives, its management structure and the type of data it contains.
The catalogue aims to lead to new partnerships and collaborations. "Our modest ambition is to help new research projects emerge", says Dr. Lhosmot. "It is the responsibility of the teams concerned to contact the manager of the database in question in order to agree the terms and conditions for reuse of some or all of the data in the database." By sharing best practices, the portal hopes to promote the sharing and reuse of information.
Inserm says there is no limit to potential scientific use cases - "the collection is deliberately broad", Dr. Lhosmot says. The list includes databases associated with public and private-sector research activities and links to the main health surveys that are used to gather public health statistics. It provides pointers to al kinds of data collection systems that are potentially useful for research and health monitoring such as morbidity registers and the large medical and administrative databases used by health insurers and healthcare funds.