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MATOLOGY.

Highlights
The Institute of Rare Diseases Research (IIER) is developing the project namely,
SpainRDR which aims to build the National Rare Diseases Registry in Spain in

collaboration with all Spanish Health Departments of the Autonomous Commu-

nities (AC), MSSSI, CREER, medical societies, FEDER, researcher networks and
also some organizations from the pharma sector (ASEBIO and AELMHU). It is a

project included in the IRDIRC. The IIER is also involved in other similar projects

like EPIRARE, GRDR-NIH and RD-CONNECT. In the later, the IIER is responsible
for designing criteria for common data elements, to standardize operating pro-

cedures and ontologies to be implemented in the future European platform for
registries, biobanks and data omics. Regarding biobanks, it is in charge to define

criteria to interoperate between Europe, USA and Australia biobanks.

In 2013, the IIER has been designed as leader of the National Rare Diseases

Biobank, ISCIII, which is a biobank involved in the Eurobiobank consortium as a
founder since 2002.

The IIER is a full member of the European project RareBestpratices, approved in 13
20
the FP7 program. This project aims to define methods and guides to be applied in T
the development of Clinical Practice Guidelines for Rare Diseases.
OR
P
The number of IIER staff has grown because of the creation of the Human Ge- RE
L
netic Area due to a ISCIII strategic decision. This new area includes four groups A
NU
with experience in inflammation and innate immunity, genetic, cellular biology N
and rare tumors. A diagnostic genetic unit has been also created.
A
R /
The IIER director has been officially designed as a Member of the European Union E
ER
Committee of Experts on Rare Diseases (EUCERD)
B
CI

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