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TRANSVERSAL PLATFORM TO SUPPORT RESEARCH AND COMMON INFRASTRUCTURES
Orphanet
CIBERER has been Orphanet’s Spanish partner since April 2010 . Orphanet is the information portal of reference in relation to rare diseases and orphan drugs and is present in about 40 countries, most of which
are in Europe .
The Orphanet portal today as a database of reference in Europe for RDs and orphan drugs, pools together information on 9,539 diseases, 6,675 queries specializing in pathologies with a low prevalence, 2,671 patient associations, 15,941 health professionals, and 1,699 laboratories from 39 countries . It has an average of 45,000 visitors a day .
In 2014, the Spanish team had a project manager, Dr . Corrochano, and one scientific documentalists, Ma Elena Mateo . The Orphanet-Spain Scientific Committee, which is responsible for validating most of the information generated in Spain, currently has 60 experts integrated in 31 different medical areas, after the integration during 2014 of the area of infectious diseases . The complete list of members of the Spanish Scientific Committee can be consulted at the following link:
http://www .orphanet-espana .es/national/data/ES-ES/www/uploads/ComiteCientifico .pdf The Orphanet Platform carried out the following activities in 2014:
DATA COLLECTION AND UPDATE:
The team is responsible for continuously collecting and updating the directory listing the services offered in Spain . The following document includes the inclusion criteria and the sources of information used for each type of activity that is recorded:
http://www .orphanet-espana .es/national/data/ES-ES/www/uploads/criterios-ES .pdf
After the process of collecting and updating data throughout 2014, the Spanish activities included in the Orphanet database are the following:
Total of Spanish activities in 2014
Specialized clinical queries
395
Patient associations
265
Diagnostic tests
7141
Clinical trials
844
Research projects
428
Registries / Biobanks
68
52 CIBERER » Annual report 2014