Methodology

Rare Commons, using a social network format, offers the chance to bring together patients for study. The online format eliminates geographical distance and makes it feasible to recruit the greatest number of patients possible, and thereby gain greater insight into the clinical manifestations and natural course of the disease in question.

This research model has proved helpful in the development of further knowledge about more common diseases; studies of this kind are known as “crowdsourced health research studies”. The fact that they are designed by physicians who also participate jointly in them adds to their reliability in comparison to other platforms using a similar methodology.

Rare Commons allows physicians to work collaboratively in the analysis of the information obtained and also to request help from the working group forum, when needed, in making decisions about care.

Regarding the collaboration dynamics, the physicians will be personally invited by each participating family to complete a questionnaire on the patient geared to the physician’s own specialization. The questionnaire will include clinical data that can be used to build a broad, exhaustive database for subsequent collaborative study and analysis by the participating doctors.