Page 33 - MEMOCiberer014-ENG

There are currently 20 LCGs linked to the CIBERER relating to 4 RPs: Paediatric and Developmental Medicine, Inherited Metabolic Medicine, Endocrine Medicine and Hereditary Cancer and Related Syndromes . This undoubtedly shows the Centre’s clear support for translating research to clinical practice by means of carrying out cooperative projects in specific pathologies .
The LCGs are currently the following:
• Relating to Paediatric and Developmental Medicine RPs: Dra . Encarna Guillén (Hospital Virgen de la Arrixaca, Murcia) Dr . Feliciano J . Ramos (Hospital Lozano Blesa, Zaragoza) Dr . Jordi Rosell (Hospital Son Espases, Palma de Mallorca) Dra . Isabel Tejada (Hospital Cruces, Bilbao)
• Relating to Inherited Metabolic Medicine RPs: Dr . Luis Aldámiz-Echevarría Azuara (Hospital Cruces, Bilbao) Dra . Ma Luz Couce (Hospital Clínico de Santiago de Compostela, La Coruña) Dr . Luis González Gutiérrez-Solana (Hospital Infantil Niño Jesús, Madrid) Dr . Eduardo López Laso (Hospital Reina Sofía, Córdoba) Dr . Guillem Pintos (Hospital Germans Trías i Pujol, Barcelona) Dra . Mireia del Toro (Hospital Vall d´Hebrón, Barcelona)
• Relating to Endocrine Medicine RPs: Dra . Irene Halperin (Hospital Clínic, Barcelona) Dra . Mónica Marazuela (Hospital La Princesa, Madrid) Dr . Antonio Picó (Hospital General de Alicante, Alicante) Dr . Manuel Puig Domingo (Hospital Germans Trías i Pujol) Dr . Alfonso Soto (Hospital Virgen del Rocío, Sevilla)
• Relating to Hereditary Cancer and Related Syndromes RPs: Dra . Isabel Badell (Hospital de la Santa Creu i Sant Pau, Barcelona) Dra . Cristina Beléndez (Hospital Gregorio Marañón, Madrid) Dr . Albert Català (Hospital San Joan de Déu, Barcelona)
Dr . Julián Sevilla (Hospital Infantil Niño Jesús, Madrid) Dr . Joan-Lluis Vives-Corrons (Hospital Clínic, Barcelona)
SUPPORT FOR PREPARING CLINICAL PRACTICE GUIDELINES, PROTOCOLS AND INFORMATIVE MATERIAL FOR PATIENTS
The numerous CIBERER research groups work to develop products that are clearly useful in clinical practice in relation to RDs, such as clinical guidelines, operating protocols and informative material for patients .
Particularly noteworthy in the field of Clinical Practice Guidelines is the work being done by Work Group on Cancer in Polymalformative Genetic Syndromes (gT-CSgP) with the participation of several CIBERER units, coordinated by Dr . Víctor Martínez-González-U753 . The objective of this group is to offer biohealthcare professionals up-to-date information about the clinical and molecular aspects of syndromes of this type and their associated neoplasias to serve as a leader in diagnosis, prevention and follow-up with patients and family members, an in teaching and research . In 2014, the group published the Guideline on Bannayan-Riley-Ruvalcaba (BRR) Syndrome .
By way of example, another one of the Guidelines drawn up in 2014 is the Guideline on Lowe Syndrome for families, published by CIBERER and Hospital Sant Joan de Déu . The medical team of researchers led by
www .ciberer .es 33