Page 36 - MemoriaER-Eng

HORIZONTAL PROGRAMMES

Existing collaborations and establishing new collaborations with
Results
Linked Clinical Groups (LCG) in the framework of the NHS

As established in Article 12(k) of the CIBERER Statutes, the Scientific Director is res-
ponsible for presenting and reporting to the Permanent Commission proposed scien-

tific agreements and association agreements before signing them. Furthermore, as

established in Article 28 of the Consortium Statutes, subject to the Scientific Director’s
report and a favorable report from the Permanent Commission, the Governing Board

may associate NHS centre clinical groups with CIBERER. This association would be

necessary to carry out CIBERER programmes by means of specific agreements.

Therefore, in the framework of its Strategic Plans in 2013, CIBERER opened up the
possibility of including new Linked Clinical Groups resulting from the change in the

Statutes in 2010, thereby offering a chance to conduct translational research having
an even greater reach.

This will allow CIBERER groups to collaborate with groups that have vast clinical expe-

rience with RD, accelerating the final translation of the research conducted by CIBE-

RER groups into the NHS.

In summary, efforts are pooled within the framework of skills and expertise that are
characteristic of each of them, health centres and CIBERER research groups, deve-

loping cooperative, multidisciplinary and translational research activities, as well as ó
working to transfer research and development results and handling scientific training

specialized in Biomedicine, and specifically in the area of rare diseases.

From a strategic viewpoint, this process was started by the Clinical groups who had
é
been collaborating with CIBERER research groups and belonged to the Pediatric and
Developmental Medicine Research Programme coordinated by Dr. Pablo Lapunzina.

After selecting and validating the proposed LCG according to the criteria established

by the ISCIII during the 2011-2012 period, and as declared during the 6th CIBERER

Annual Meeting in February 2013, the association of four clinical groups with vast clini-
cal experience that would greatly complement the lack of dysmorphologists in the field

of the CIBERER was proposed by the Pediatric and Developmental Medicine Research
Programme for approval by the CIBER-Rare Diseases Steering Committee.

The LCG are the following:

• Dr. Isabel Tejada (Hospital Universitario Cruces, Bilbao).

• Dr. Jordi Rosell (Hospital Universitario Son Espases, Palma de Mallorca).

•
Dr. Feliciano J. Ramos (Hospital Universitario Lozano Blesa, Zaragoza).

• Dr. Encarnacin Guilln (Hospital Universitario Virgen de la Arrixaca, Murcia).

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Following a similar process, at the end of 2013 the Inherited Metabolic Medicine Pro- 20
gramme initiated proceedings to link clinical groups, and the agreements will be sig- T
R
ned at some point in 2014.
PO
E
Furthermore, clinical groups will continue to be associated with other CIBERER Re- L R
A
search Programmes to the extent possible.
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