Page 48 - MemoriaER-Eng

TRANSVERSAL PLATFORMS

Orphanet

CIBERER been Orphanet’s Spanish partner since April 2010. Orphanet is the informa-

tion 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 RD and orphan

drugs, pools together information on 9,264 diseases, 6,545 queries specializing in
pathologies with a low prevalence, 2,557 patient associations, 19,544 health profes-

sionals, and 1,668 laboratories from 37 countries (December 20, 2013). It has an
í
average of 30,000 visitors a day.

In 2013, the Spanish team has a project manager, Dr. Corrochano, and two scientific
documentalists, Martn Arlés and Ma Elena Mateo. The Orphanet-Spain Scientific Com-

mittee, which is responsible for validating most of the information generated in Spain,

currently has 59 experts integrated in 30 different medical areas. 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 2013:

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 2013, the Spanish activi-

ties included in the Orphanet database are the following:

13
20
Total of Spanish Activities in 2013
T
R
PO
Specialized clinical queries
423
E
L R
Patient associations
666
A
NU
N
Diagnostic tests
6743
A
/
Clinical trials
666
ER
ER
Research projects
423
B
CI

Registries/Biobanks
66
48