Patient portal
At the Pediatric Pulmonology Department, our aim is to study patients with respiratory symptoms who have not yet been diagnosed, provide preventative healthcare, diagnostics and treatments to patients with rare, chronic, respiratory diseases that are both severe and complex.
The department takes patients from birth to the age of 18, on both an outpatient and inpatient basis. Care is also provided in the Day Hospital at the SJD Pediatric Cancer Center Barcelona, as well as the intermediate healthcare centre La Casa de Sofia.
The department also offers second opinion appointments and consultations for national and international patients.
Accreditations
The Pediatric Pulmonology Department at the SJD Barcelona Children's Hospital is accredited as a high-complexity specialist unit, with a recognition of excellence by the Spanish Society of Pulmonology and Chest Surgery (SEPAR).
Furthermore, the department is accredited by the Catalan Health Service as a centre in the Network of Units of Clinical Expertise (XUEC) in rare respiratory pediatric diseases in the following areas:
- Interstitial pulmonary diseases.
- Cystic Fibrosis.
- Non–cystic fibrosis bronchiectasis.
- Primary ciliar dyskinesia.
- Alpha-1-antitrypsin deficiency.
- Ventilation disorders.
- Respiratory malformations.
The department is also part of the following accredited interdisciplinary groups:
- XUEC for kidney diseases, neuromuscular diseases, primary immunodeficiencies and systemic autoimmune diseases.
- CSUR-accredited centre for ataxia and hereditary paraplegia, neuromuscular diseases, diseases with associated movement disorders, imported tropical diseases and hereditary red blood cell disorders.
- ERN Centre for neuromuscular diseases (ERN EURO-NMD) and hereditary and congenital digestive and gastrointestinal diseases (ERNICA).
In 2022, the Cystic Fibrosis Unit was recognised as a reference unit of Excellence by the Spanish Society of Cystic Fibrosis and the Spanish Federation of Cystic Fibrosis.
Why the SJD Barcelona Children's Hospital?
The SJD Barcelona Children's Hospital is a maternal-infant healthcare facility specialised in rare, highly complex diseases. The Home Mechanical Ventilation Programme and the Cystic Fibrosis Unit are leading programmes at the centre.
We work hand in hand with several hospital departments to ensure the highest standards of medical care and comprehensive nursing to our patients.
Comprehensive care
Several services throughout the Hospital work together to provide comprehensive medical and nursing care to our patients with pneumological diseases and their families, without forgetting about psychosocial care.
Furthermore, Pediatric Pulmonology also acts as a cross-service platform providing respiratory care to patients whose diseases do not primarily impact their respiratory system. As such, we tend to patients with respiratory conditions who are referred from other services, including Neurology, Onco-hematology, Rheumatology, Immunology, Orthopedics and Traumatology, Gastroenterology, Hepatology and Nutrition, among many others.
We have several tools to promote direct contact between healthcare teams at the SJD Barcelona Children's Hospital, the patient and their family, and the various healthcare facilities local to them.
Quick, personalised monitoring
Our tools and methods encourage direct contact between care teams at the SJD Barcelona Children’s Hospital, the patient and their family, as well as healthcare teams in their home neighbourhood or area.
Certain rare and complex disease programmes are coordinated by a specific case manager, who can be contacted directly by phone, email or through a specific page on the Hospital's Patient Portal.
All patients cared for at our centre can contact the Service secretary and access the generic Patient Portal.
We offer comprehensive care to patients and their family, with educational training programmes to get them involved in managing the disease.
Patient and family training
We offer comprehensive care to our patients and their family, with education schemes that involve them in the management of their disease.
At the Pediatric Pulmonology Service, we offer several healthcare training programmes that make it possible for patients and their family to learn about and implement optimal disease management techniques. Upon reaching adolescence, training progressively shifts towards patient-driven care, so that they learn to take responsibility for their treatment and become the main decision-maker. This process ends with the patient transitioning to adult hospital facilities from when they reach 18 years of age.
Indicators
Patients seen during admission
Outpatient medical care
Outpatient nursing care
CSAT index satisfaction in the patient experience (2023)
Our 2022 Figures
Specialisms and departments
Services
We guarantee the comprehensive treatment of any disorder the child may present with up until the age of eighteen. We work with a highly specialized and multidisciplinary team
We treat all manner of digestive tract and liver conditions, as well as nutritional problems.
We treat patients who are suffering from any sort of disability and help them to recover as much functional capacity as possible to facilitate their rapid reintegration.
We treat all disorders related with the ear, nose and throat (airway).
We prevent, diagnose and treat disorders of the central and peripheral nervous system in children and adolescents.
We are a national and international reference centre in the provision of healthcare and conducting research into pediatric cancer.
We focus on patients and their requirements, rather than just on the medicine itself.
We collect and analyse patient samples in order to provide useful information for the diagnosis, treatment and follow-up of each disease.
We play a key role during the diagnosis, treatment and follow-up of patients.
Units
A multidisciplinary team for the diagnosis and treatment of cystic fibrosis and training patients and their families on its management.
We use pioneering treatments and treat all neuromuscular diseases, particularly Duchenne muscular dystrophy and spinal muscular atrophy
We identify and treat insomnia and other sleep disorders in children to improve their quality of life and that of their family.
Diseases we treat
Tests we offer
Functional Respiratory and Allergology Testing Office (GEFRA)
Facilities with pulmonary function laboratory and allergology testing. We conduct the following tests in the Pulmonology Department:
Other diagnostic tests
Coordination with other departments and unit for studies
Treatments we offer
Team
GEFRA Nursing Team
Lead Administrators
- Carolina Blanco Moreno
- Marta López Sanz
Research
The team in the department are members of various scientific societies and they actively participate in multicentre study groups, international registries and medical conferences, as well as in the development of clinical trials for new treatments in the Clinical Research Unit.
These are some of the research projects they have participated in over the last five years.
Multi-centre studies
We are involved in studies that take place across several research centres which all follow the same protocol.
- Multidisciplinary study on pulmonary function in adolescents who were born prematurely, with or without bronchopulmonary dysplasia. PRADIS STUDY: Coordinator: Perinatal Pathology Working Group of the Spanish Society of Paediatric Pneumology.
- The European Cystic Fibrosis Society Patient Registry. Coordinator: European Cystic Fibrosis Society.
- Molecular characterization of Primary Ciliary Dyskinesia. Coordinator: Vall d’Hebron Hospital.
- Improving diagnosis of Primary Ciliary Dyskinesia. Coordinator: Vall d’Hebron Hospital.
- Multi-centre study on bronchopulmonary infection in cystic fibrosis and the interaction between Pseudomonas aeruginosa and Staphylococcus aureus in the respiratory microbiome. Coordinator: Ramón y Cajal Hospital.
- Epidemiological, clinical and genetic characterisation of pediatric diffuse parenchymal lung diseases. Coordinator: Vall d’Hebron Hospital.
Clinical trials
In collaboration with the Clinical Research Unit of SJD Barcelona Children's Hospital Barcelona, we carry out numerous trials, of which we highlight some from the last five years.
- EFC14153. A randomized, double-blind, placebo-controlled, parallel group study to evaluate the efficacy and safety of dupilumab in children 6 to <12 years of age with uncontrolled persistent asma. Sanofi. 2017-2020.
- A Phase III Double-blind, Randomized, Placebo-Controlled Study assessing the Efficacy, Safety and Tolerability of Idebenone in Patients with Duchenne Muscular Dystrophy Receiving Glucocorticoid Steroids. Sideros. 2017-2020.
- Randomized, double-blind, Phase 3 Trial to evaluate the safety and efficacy of treatment regiments of aztreonam 75mg powder and solvent for nabulizer solution/aztreonam for inhalation solution (AZLI) in pediàtric subjects with cystic fibrosis (CF) and new onset respiratory tract Pseudomonas aeruginosa (PA) infection/colonization (ALPINE2) Gilead. 2017-2021.
- VX19-445-117: A phase 3b open-label study to assess the effect of elexacaftor/tezacaftor/ivacaftor on glucose tolerance in cystic fibrosis subjects with abnormal glucose metabolism. Vertex. 2021- 2022.
- VX20-445-121: A Phase 3b Open-label Study Evaluating the Safety of Elexacaftor/Tezacaftor /Ivacaftor Combination Therapy in Cystic Fibrosis Subjects. Vertex. 2022-2023.
- VX20-121-102: A Phase 3, Randomized, Double-blind, Controlled Study Evaluating the Efficacy and Safety of VX-121Combination Therapy in Subjects With Cystic Fibrosis Who Are Heterozygous for F508del and a Minimal Function Mutation (F/MF) Vertex. 2022-2023.
- VX21-445-124: A Phase 3 Double-blind, Randomized, Placebo-controlled Study Evaluating the Efficacy and Safety of ELX/TEZ/IVA in Cystic Fibrosis Subjects 6 Years of Age and Older With a Non-F508del ELX/TEZ/IVA-responsive CFTR Mutation. Vertex. 2022-2023.
- VX21-445-125: A Phase 3 Open-label Study Evaluating the Long-term Safety and Efficacy of Elexacaftor/Tezacaftor/Ivacaftor in Cystic Fibrosis Subjects With Non-F508del CFTR Genotypes. 2023.
- VX20-121-104: A Phase 3, Open-label Study Evaluating the Long-term Safety and Efficacy of VX-121 Combination Therapy in Subjects With Cystic Fibrosis. 2023.
Innovation
The Pulmonology Department has taken part in the development of clinical trials testing new healthcare devices, for example:
- A study on the efficiency of an at-home respiratory physiotherapy incentivisation programme using video games (Funny Friends) for pediatric patients with cystic fibrosis. SJD Research Foundation - Funny Friends - 2014, edition 1.0, 4 May 2014.
- POWERPATCH An automated, intelligent skin patch for diagnosing cystic fibrosis. Version 1.0, 13 December 2019. See in context: Horizon 2020 ERC-2019-Poc: POWER-PATCH_Self-powered skin patch for cystic fibrosis diagnosis.
Teaching
The team in the department regularly takes part in several training courses and ongoing professional development activities.
The Pulmonology Department is currently training staff members in the sub-specialism of pediatric pulmonology: Pediatrics MIR at SJD Barcelona Children’s Hospital (2nd year of mandatory rotation, and 4th year of optional, as well as external residencies and Allergology MIR at Hospital Clinic Barcelona).
We also boast high demand for training of specialist staff who wish to deepen their knowledge in specific areas, with personalised rotations.
We conduct several educational events aimed at caregivers, healthcare staff and even non-medical personell, such as patients with chronic respiratory disease, for example:
- Simulation training course for caregivers of tracheostomy patients (several editions from 2015 to 2023).
- Online training course for families and patients with cystic fibrosis (2021).