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
- Dhaenens, BAE, Mahler, F, Batchelor, H, Dicks, P, Gaillard, S, Nafria-Escalera B, Kopp-Schneider, A, Ribeiro, MA, Schwab, M, Sparber-Sauer, M, Leubner, J, de Wildt, SN and Oostenbrink, R Optimizing expert and patient input in pediatric trial design: Lessons learned and recommendations from a collaboration between conect4children and European Patient-CEntric ClinicAl TRial PLatforms CTS-CLINICAL AND TRANSLATIONAL SCIENCE . : .
- Baird AM, Westphalen CB, Blum S, Nafria-Escalera B, Knott T, Sargeant I, Harnik H, Brooke N, Wicki N and Wong-Rieger D How can we deliver on the promise of precision medicine in oncology and beyond? A practical roadmap for action health science reports . 6(6): .
- Hernández-García M, Bassat Q, Fumadó V, Rodas G, Pi R, Miranda-García M, Girona M, Català M, Alonso S, Alvarez-Lacalle E, López D, Melé-Casas M, Pons-Tomas G, Fernández de Sevilla-Estrach M, Bonet E, Fortuny-Guasch C, García-Miquel A, Jou-Munoz C, Adroher C, Claverol J, Cubells M, Codina-Bergadà A, Cuadras-Palleja D, Gratacós E, Brotons-de los Reyes P, Munoz-Almagro C, Prats C, García-García JJ and Jordán-García I SARS-CoV-2 transmission in teenagers and young adults in Futbol Club Barcelona's Multidisciplinary Sports Training Academy EUROPEAN JOURNAL OF PEDIATRICS . : 2421-2432.
Projects
- Project name:
- Plataforma para el desarrollo de terapias innovadoras y necesidades médicas no cubiertas en poblaciones vulnerables: investigación pediátrica y salud mental.
- Leader
- Joana Claverol Torres
- Funding entities:
- Instituto de Salud Carlos III (ISCIII)
- Code
- PT23/00090
- Starting - finishing date:
- 2024 - 2026
- Project name:
- Design, Implementation and Development of a Psychosocial Study on COVID-19 Vaccine Trial Participation (RBDCOV Project)
- Leader
- Begoña Nafria Escalera
- Funding entities:
- European AIDS Treatment Group
- Code
- PFE00112
- Starting - finishing date:
- 2023 - 2024
- Project name:
- HELPING HELPERS_Burnout prevention for those working with chronically ill and disabled youth
- Leader
- Begoña Nafria Escalera
- Funding entities:
- European Commission
- Code
- PFE00124
- Starting - finishing date:
- 2023 - 2024
News
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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.
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The Pediatric Innovation Day 2023 is celebrated in Warsaw
The third edition of Pediatric Innovation Day (PID) marked a milestone by being held outside Barcelona for the first time, moving to Warsaw. This event solidified itself as a space for collaboration and shared knowledge, emphasizing the importance of international cooperation, active patient participation, and a precise understanding of specific needs in the pediatric healthcare field.
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The IRSJD joins the XarSMART network to promote the transfer of medical technology in Catalonia.
The Institut de Recerca Sant Joan de Déu (IRSJD) participates in XarSMART, a project that aims to promote the generation of medical technologies and new companies in Catalonia in the field of life sciences and health.