Únicas is born, a network to better care for children with rare diseases

Today has been presented in the Congress of Deputies the unique networka project in which 25 hospitals, research centers and the Spanish Federation of Rare Diseases (FEDER) are integrated, and whose main objective of this project is to set up a network of health centers to improve the care of pediatric patients with rare diseases, and that seeks to generate a change in the care model and the sectors involved in the present and future care of these minority pathologies.

More than 3 million Spaniards have a rare disease. Of these, 80% of the cases have debuted during childhood. The low prevalence of these pathologies makes their diagnosis, treatment and investigation very difficult. To guarantee equity in the care of these patients, this initiative was born, which is promoted by the Hospital Sant Joan de Déu Barcelona, ​​the center that cares for the most children with minority diseases in Spain and third in Europe, which treats more than 22,600 patients with complex minority diseases (9.3% of the total), and by the Spanish Federation of Rare Diseases (FEDER).

Besides of Sant Joan de Déu Hospitalthe promoter center of the project, the network is made up of the following affiliated hospitals:

  1. C H Navarra
  2. CHUA Coruña
  3. C H U Badajoz
  4. H C U Santiago
  5. HCU Virgin Arrixaca
  6. H Baby Jesus
  7. H Parc Taulí
  8. H Saint Peter
  9. HU October 12
  10. H U Central Asturias
  11. H U Cruces
  12. HU La Paz
  13. HU Marquis Valdecilla
  14. HU Miguel Servet
  15. HUP Day Fri
  16. HU Reina Sofía (Córdoba)
  17. HU Rio Hortega
  18. H U Salamanca
  19. HU Are Espases
  20. HU Toledo
  21. HU Vall d’Hebron
  22. HU Virgin of Rocío
  23. HU Enter. Ms. From Candelaria
  24. HU of Gran Canaria Doctor Negrín

The existence of more than 7,000 minority diseases, some of them ultra-rare (only a few cases occur worldwide), makes their diagnosis difficult because they are unknown even by many health professionals.

This situation means that many children have to wait years and undergo dozens of tests and visit numerous specialists until a definitive diagnosis is obtained. Currently, 25% of affected children and their families take more than four years from when they present the first symptoms until they are diagnosed with the disease.

representative samples

Obtaining representative samples of patients affected by a minority disease allows us to know the natural history of the disease and promote research to find new treatments. Currently, 95% of minority diseases do not have a specific treatment.

One of the main handicaps that researchers encounter when promoting studies that allow the discovery of new treatments is obtaining a significant sample of patients. As these are rare diseases, the number of people affected in an autonomous community is very small and it is necessary to look for them at the state and world level.

Access to advanced treatments for all

Another of Únicas’ objectives is to guarantee that all patients, regardless of their place of residence, have access to the most advanced treatments for their disease and the necessary care resources. To this end, the network provides that health professionals who are part of Únicas maintain contact through telemedicine to agree on actions with leading professionals in a specific pathology.

shared knowledge

One of the Unique network tools is the Share4Rare digital platform, promoted by Hospital Sant Joan de Déu, which connects professionals and patients with rare diseases so that they can exchange information in a safe digital environment and advance knowledge of diseases. minority.

Campaign Make time go our way

The event included the intervention of the President of the Congress, Meritxell Batet; the Minister of Health, Carolina Darias, the Managing Director of the HSJD, Manel del Castillo and the President of FEDER, Juan Carrión, representatives of the entities promoting the Únicas network. In addition, members of the Congress Bureau, the Health and Consumption Commission and spokespersons for Congress attended the event.

The 25 hospitals make up a network that, together with Primary Care centers, universities and research centers, wants to guarantee equity in care for all these patients regardless of where they reside in Spain

“On World Disease Day, which we celebrate today, February 28, with our campaign “Make time go our way”, it is a gift to be able to present this project through which we want to prevent families from making a pilgrimage between various hospitals to get your child’s condition identified. That is why it is a pleasure to collaborate with him from FEDER, since he is an excellent example of networking that strives to improve the care of our group.” says Juan Carrión, president of FEDER.

For his part, Manel del Castillo, managing director of Hospital Sant Joan de Déu, affirms that the Únicas network “is a project that aims to provide a global response to pediatric patients with minority diseases” and adds: “we are a network of 25 hospitals that They will create a technological platform to share data, which will allow us to improve: the multidisciplinary care model, the accessibility of these patients thanks to telemedicine, the diagnosis based on precision diagnostic techniques and the equity of access to advanced therapies” .

6 performance programs

In addition to the 23 hospitals and FEDER, the Únicas network has the support of other European hospitals and universities, research centers, pharmaceutical companies, health technology companies and associative entities. These are leading entities in the field of diagnosis, telemedicine, new therapies and data intelligence.

It is expected that they promote 6 action programs:

  1. 4P diagnostic program (precision, personalized, early and predictive) to give support to network centers, through the app and development of new diagnostic techniques genomics (developed within the framework and in coordination with the ISCIII IMPaCT project), radiomics, metabolomics, molecular genetics of cancer and precision neurophysiological diagnosis.
  2. Discovery Program (innovative therapies) oriented to development of new treatments jointly with universities, research centers, hospitals, the pharmaceutical industry and health technology companies.
  3. Share4Rare (S4R) data intelligence program. A federated data ecosystem, in which each associated center at the national and European level keeps its own information, but the necessary information to share is agreed upon to generate the knowledge that allows progress towards personalized prediction and prevention models. The project aims to empower patients to actively participate in information sharing.
  4. Telemedicine Cortex Program. Advanced telemedicine platform to support non-face-to-face care, through remote follow-up and monitoring of these patients, incorporating prediction models that allow us to anticipate events
  5. IPER. Pediatric Institute for Rare Diseases. Oriented towards the creation of a 360º comprehensive care model to patients with MSS. It includes multidisciplinary teams of professionals, the generalization of the figure of case managers, the incorporation of psychosocial support teams, transition units to adult centers and monitoring of the EEMM census.
  6. Chronic care institute and health school for patients and families: The Sofia’s house. It is articulated through the creation of a social health center (includes a support center for mechanical ventilation at home) and a health school for patients and families.

Source: www.webconsultas.com

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