Research projects use the SHCS data (and specimens) to a variable degree. Some projects are based on analysis of available data, whereas some others use the database to identify potential candidates for basic research issues or psychosocial studies. For many recent projects, additional data has to be generated, e.g. through the use of the repositorium. Any use of data for scientific projects requires the Scientific Board’s agreement.

Each centre receives monthly a copy of the database. This information can be used for administrative purposes (convene the patient to a visit) as well as for the evaluation of the feasibility of planned research projects. Each centre has designated a responsible person for the database, and any other person authorized to use the database is registered in a log-book.