Patients Engagement in Research
Research Program
Where we are
SJD Barcelona Children's Hospital
Related websites
The focal point of our group is the study of the impact of active participation of paediatric patients and their families in the organisation's research projects (clinical trials and innovation initiatives).
Our experience in this area dates back to 2015, when our organisation created the Adolescents Scientific Council. With the Kids Barcelona group, we can involve patients in our own projects or in other projects in which we participate. This generates scientific evidence on the benefits of the active inclusion of patients throughout the life span of such projects.
Our group coordinates eYPAGnet, the European network of Young People's Advisory Groups (YPAGs) and is recognised by EnprEMA (European Networks of Paediatric Research of the European Medicines Agency). We are also members of two global initiatives: ICAN (International Children's Advisory Network) and PFMD (Patient Focus Medicine Development).
Research lines
- Educational materials and other resources for patient empowerment in the field of research.
- Return on Investment (ROI) and Equity (ROE) analysis of the participation of paediatric patients in the conduct of clinical trials.
- Design of paediatric patient participation and collaboration processes in a pan-European clinical trial infrastructure.
- Development of collective intelligence methodologies for the generation of emerging scientific knowledge among patients and families.
Scientific objectives
- To develop guidelines with recommendations for clinicians on the process of designing and developing activities to encourage patient involvement in research projects.
- To develop a Welcome Kit for patients in the Clinical Trials Unit. To measure the impact of the information and educational resources provided on patients' participation in each of the studies.
- To validate the use of new technologies in the process of patient participation in clinical trials. For example, the introduction of electronic informed consent.
- To design an international consensus guide validated by all agents involved in the process for the participation of paediatric patients in research (white paper).
- To analyse the impact of a collaborative methodology through the collective intelligence of patients and families to improve clinical knowledge of rare pathologies, through an on-line platform for social innovation.
Area/Field of expertise
The different research initiatives coordinated by the Patient Engagement in Research group, or in which it participates, focus on the participation of patients and their families in research projects. For the most part, these initiatives involve clinical trials and foster the conduct of studies that focus on patients' needs.
The field on the participation of paediatric patients in clinical trials is relatively new and innovative, with very limited experience available. Scientific evidence is therefore necessary to be able to standardise methodologies and metrics across Europe.
Coordination of the eYPAGnet gives us the opportunity to make our mark in Europe and consolidate a framework for action governed by common ethical principles.
Group members
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Jefe de Grupo
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Jefe de Grupo
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Investigador
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Ayudante de investigación
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Gestión
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Marine Isabel Fernandez Lichti
Gestión
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Helena Martinez Lopez-Amor
Gestión
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Diana Carolina Garcia Ramon
Gestión
Last Publications
- Pons-Tomas, Gemma, Hernandez-Garcia, Maria, Mele-Casas, Maria, Fernández de Sevilla-Estrach M, Launes-Montana C, Girona M, Rios-Barnés M, Bassat Q, Ajanovic, Sara, Cubells M, Claverol J, Penela-Sanchez, Daniel, Jou-Munoz C, Manuel Monsonis Cabedo, Esteva-Afonso C, Fassanella, Assumpta, Cuadras-Palleja D, Munoz-Almagro C, Jordán-García I, Fortuny-Guasch C, García-García JJ and Fumadó V Clinical Characterization, Transmissibility, and Seroconversion of SARS-CoV-2 Infection in Children (before the Start of Vaccination) in the Barcelona Metropolitan Region (Spain) Journal of Pediatric Infectious Diseases . 19(05): 251-259.
- Cortese S, Purper-Ouakil D, Apter A, Arango C, Baeza I, Banaschewski T, Buitelaar J, Castro-Fornieles J, Coghill D, Cohen D, Correll CU, Grünblatt E, Hoekstra PJ, James A, Jeppesen P, Nagy P, Pagsberg AK, Parellada M, Persico AM, Roessner V, Santosh P, Simonoff E, Stevanovic D, Stringaris A, Vitiello B, Walitza S, Weizman A, Wong ICK, Zalsman G, Zuddas A, Carucci S, Butlen-Ducuing F, Tome M, Bea M, Getin C, Hovén N, Konradsson-Geuken A, Lamirell D, Olisa N, Nafria-Escalera B and Moreno C Psychopharmacology in children and adolescents: unmet needs and opportunities. The lancet. Psychiatry . 11(2): 143-154.
- Reidemeister S, Nafria-Escalera B, Marín D, Balayla J, Klingmann I and Klingmann V Young patients' involvement in a composite endpoint method development on acceptability for paediatric oral dosage forms. Research Involvement and Engagement . 9(1): 108-108.
Projects
- Project name:
- READI_Research in Europe and Diversity Inclusion
- Leader
- Begoña Nafria Escalera
- Funding entities:
- European Commission
- Code
- 101166227
- Starting - finishing date:
- 2025 - 2030
- Project name:
- Juga i aprèn sobre recerca biomèdica al vestíbul de Sant Joan de Déu
- Leader
- Begoña Nafria Escalera
- Funding entities:
- Fundació Institució Catalana per a la Recerca i la Innovació
- Code
- 1295
- Starting - finishing date:
- 2025 - 2025
- Project name:
- Project-COMFORT_Patient-Centric blOod saMpling FOr impRoved healThcare
- Leader
- Begoña Nafria Escalera, Joana Claverol Torres
- Funding entities:
- European Commission
- Code
- 101163781
- Starting - finishing date:
- 2024 - 2028
News
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Adolescent mental health at the center of the Science4Pandemics closing event
The Patient Participation in Research Area of the Sant Joan de Déu Research Institute organized a hybrid event on January 15 with the aim of raising awareness about mental disorders in adolescents and promoting tools to care for mental health during this critical stage.
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Nanomedicine to tackle rare diseases
Experts in nanomedicine from various fields have gathered today for the fifth consecutive year at Nano Rare Diseases Day. This event is co-organized by IRSJD and the NANOMED Spain platform, coordinated by IBEC.