What is Rare Commons?

Rare Commons is a research Project at the Sant Joan de Déu Hospital in Barcelona focused on the biomedical study of rare diseases that affect children.

The undertaking is organized around an online platform that allows for interaction among users, thanks to a dynamic format modeled on virtual social networks and building upon information, learning, and participation. Users are grouped into private communities that bring together families and physicians who can work together to expand scientific knowledge about the illnesses in question and better record their natural course and evolution. The communities are also designed to provide mutual support between families and physicians.

International approach by the use of the web and the technology 2.0

Thanks to its international scope, the Rare Commons project allows for the study of the largest possible number of children worldwide affected by the diseases in question. The platform is designed for users to participate in Spanish, French, or English, with an eye toward including additional languages in the near future. This aspect is essential if we are to be able to study the greatest possible number of patients and thereby achieve statistically reliable results in our quest to attain the maximum level possible of knowledge about the diseases.

A research method with the involvement of families, physicians and Sant Joan de Déu Hospital

The working methodology chosen allows for the collecting of reliable, rigorous, and up-to-date information through the participation of families and physicians who are offered the opportunity to complete exhaustive questionnaires with data about the diseases.

This method of work yields benefits both for the families and the physicians. The families benefit from increased information about the disease and the latest scientific findings, which are brought to their attention through their participation. The physicians, and other clinical professionals, have access to an interactive environment for the study of clinical cases and the decisions that are made about how to provide care for patients. They also earn the opportunity to become co-authors of the scientific papers that emerge from their participation in Rare Commons.

The doctors of Sant Joan de Déu Hospital in Barcelona, specialists in the various areas of study concerning the diseases grouped under Rare Commons, will be in charge of coordinating participation and of the scientific output of the physicians caring for the children who are involved in the project.