Patient portal
The Pediatric Pulmonology Service aims to study patients with respiratory symptoms who do not yet have a confirmed diagnosis, provide preventative care, and diagnose and treat patients with rare, complex respiratory illnesses and diseases.
The Service provides care to infants, children and teenagers from birth up to 18 years of age, in both outpatient clinic and hospital healthcare settings. Care is also provided in the Day Hospital at the SJD Barcelona Children's Hospital, as well as the intermediate healthcare centre La Casa de Sofia.
In addition, the Service also offers second opinion consultations to both national and international patients.
Accreditations
The Pediatric Pulmonology Service at the SJD Barcelona Children's Hospital is part of the Xarxa d’Unitats d’Expertesa Clínica (XUEC; Network of Units of Clinical Expertise) for its work with rare pediatric respiratory diseases. It is accredited by the Catalan Health Service, in the following areas:
- Interstitial lung diseases.
- Cystic fibrosis.
- Non‐cystic fibrosis bronchiectasis.
- Primary ciliary dyskinesia.
- Alpha-1-antitrypsin deficiency.
- Disorders of ventilatory control.
- Respiratory malformations.
The Service is also a member of the following interdisciplinary accredited groups:
- XUEC for renal, neuromuscular and primary immunodeficiency diseases, and systemic autoimmune diseases.
- CSUR Centre for ataxia and hereditary paraplegias, neuromuscular diseases, diseases that evolve into movement disorders, imported tropical diseases and hereditary erythropathology.
- ERN Centre for neuromuscular diseases (ERN EURO-NMD) and for hereditary and congenital digestive and gastrointestinal diseases (ERNICA).
In 2022, the Cystic Fibrosis Unit was recognised as a leading unit of reference, with a distinction of Excellence by the Sociedad Española de Fibrosis Quística [Spanish Cystic Fibrosis Society] and the Federación Española de Fibrosis Quística [Spanish Cystic Fibrosis Federation].
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.
Several services throughout the Hospital work in unison to provide comprehensive medical and nursing care 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.
Our tools and methods encourage direct contact between several people: 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.
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 our patients and their family, with education schemes that involve them in the management of their 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)
2022 Data
Specialisms and services
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 reference centre for the care and research of developmental cancer and an international reference centre.
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.
We are a reference in the comprehensive treatment of infectious diseases in children.
Units
A multidisciplinary team for the diagnosis, treatment and training of our patients and their families in the management of cystic fibrosis.
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.
Pathologies we treat
Tests we offer
Functional Respiratory and Allergology Testing Office (GEFRA)
Facilities with pulmonary function laboratory and allergology testing. The following respiratory tests are performed:
Other diagnostic tests
Cross-service coordinated studies
Treatments we offer
Team
GEFRA Nursing Team
Lead Administrators
- Carolina Blanco Moreno
- Marta López Sanz
Research
The Service team is also part of several different scientific societies, with active involvement in multicentre research groups, international registers, medical conferences, as well as in the development of clinical trials of new treatments at the Clinical Research Unit.
These are some of the research projects the team have worked on 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 Service has taken part in the development of clinical trials to create new healthcare procedures, resources and devices, such as:
- 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. Edition 1.0, 13 December 2019. In context: Horizon 2020 ERC-2019-Poc: POWER-PATCH_Self-powered skin patch for cystic fibrosis diagnosis.
Teaching
The Service team regularly takes part in several training courses and ongoing professional development activities.
The Pulmonology Service is currently training staff members in the sub-specialism of pediatric pulmonology: Pediatric 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 the Barcelona Hospital Clinic).
We also take into account the training of specialist staff who wish to deepen their knowledge in specific fields, with custom rotations.
There are different training courses aimed at caregivers of patients with chronic respiratory pathologies, both in and outside of healthcare, such as:
- Simulation course for caregivers of tracheostomy patients (several editions between 2015 and 2023).
- Online course for families and patients on cystic fibrosis (2021).