Parc Taulí has ​​been designated to be part of the first network of units of clinical expertise (XUEC) in minority diseases in Catalonia

• January 23, 2017
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The other two units that make up this network are attached to the Hospital Sant Joan de Déu in Barcelona and the Vall d'Hebron University Hospital.

Parc Taulí has ​​been designated by the Catalan Health Service (CatSalut) as one of the three units of clinical expertise that will make up the first care network for minority diseases in Catalonia, dedicated to the care of diseases. genetically based cognitive behaviors in pediatric age, together with the Hospital Sant Joan de Déu in Barcelona and the Vall d'Hebron University Hospital.

With this recognition, the three designated units of clinical expertise (UEC) will lead the diagnosis and care of people affected by any of the genetic-based cognitive-behavioral diseases in pediatric age, in accordance with the criteria and requirements that establishes the model of care for minority diseases in Catalonia.

Genetically based cognitive-behavioral diseases in pediatric age

It is a group of chronic minority diseases, of genetic origin, that present in pediatric age with great clinical variability - present disorders of neurological development with motor, cognitive (mental retardation) and behavioral manifestations (anxiety, depression, ADHD, psychotic and sleep disorders, self-harm, stereotypes, etc.) - and are diagnosed through genetic testing. This is a large group that includes minority disorders such as Fragile X Chromosome Syndrome, Williams Syndrome, Down Syndrome or sex chromosome abnormalities such as Klinefelter's Syndrome, Turner Syndrome and Trisomy X, Syndrome of Rett, Angelman Syndrome, Noonan Syndrome, Prader-Willi Syndrome, Monosomy 22q11 or Sotos¬ Syndrome.

The UEC designation procedure

The call and designation of these units of expertise has been carried out following the procedure established in the specific regulations of CatSalut. Among the most important designation criteria is the fact that the center has a high level of knowledge and experience in tackling the disease in question, as well as the existence of a multidisciplinary team set up to care for this disease.

Press release from the Ministry of Health 'The first network of units of clinical expertise (XUEC) in minority diseases in Catalonia is born'

An expertise based on a trajectory of 20 years of dedication

For Parc Taulí, this recognition is the culmination of a whole trajectory that was already recognized in the framework of the 8th edition of the World Day of Rare Diseases in Catalonia, where the multidisciplinary team of the Unit for the care of people with Genetically based behavioral cognitive disorders in Parc Taulí received recognition from the Management Committee for this celebration, for its contribution to disseminating, raising awareness and promoting research into these diseases. This recognition highlighted "the involvement, the exquisite human value of this multidisciplinary team, in addition to the studies carried out and their total predisposition to care for families"

The multidisciplinary team of the Care Unit for People with Genetically Based Behavioral Cognitive Disorders at Parc Taulí was created in 1997, as a result of the will of a group of medical professionals, from various specialties, in the face of the need for provide ongoing care to those affected by Rare Diseases who are diagnosed with genetic-based behavioral cognitive disorders. These professionals decided to organize themselves as a multidisciplinary team with the main objectives of carrying out the study and comprehensive care of the people affected, in its different aspects: clinical and laboratory diagnosis, medical follow-up protocols, assessment neurological, psychological evaluation and genetic counseling.

Within the framework of the Parc Taulí Research and Innovation Institute (I3PT), in 2015 the creation of the Rare Diseases research area was also approved, which currently has a total of 5 research groups.