Begonya Nafria
PhD Candidate
Universitat Internacional de Catalunya (UIC), Spain
Research Area: Language discrimination and cross-border access to paediatric clinical trials. Cross-case analysis on the rights of children to access clinical research and co-design of a multi-stakeholder consensus guideline by involving patients.
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Resarch and work experience:
Begonya works as a Patient Engagement in Research Coordinator at Sant Joan de Déu Chidren’s Hospital (Spain). She has significant experience in the field of the involvement of patients and families in research initiatives. She has also a personal experience as a providing care and patient advocacy as a sister of a young adult with cerebral palsy.
Her areas of expertise are focused on paediatric patients involvement in research and specifically in the field of clinical trials and in health innovation. She is currently a PhD student in the field of patient involvement in paediatrics. Her PhD project is looking at the issue of the rights of children and young people participating in clinical trials.
Begonya is also a Fellow of EUPATI (first cohort) and member of its Steering Committee, Coordinator and Founder Member of eYPAGnet (European Young Patients Advisory Group Network – www.eypagnet.eu), Coordinator of Kids Barcelona (YPAG of Sant Joan de Déu Children’s Hospital- www.kidsbarcelona.org), Co-chair of Children’s Medicines Working Party of EFPGCP, volunteer member of the Editorial Board of Center for Information & Study on Clinical Research Participation (CISCRP), member of the Patients and Families working group and Chair of the Cross-Border Access to Paedaitric Clinical Trials of EnprEMA (European Network of Paediatric Research of EMA); Coordinator of the cross-cutting theme of patients involvement in Conect4Children project (pan-European paediatric clinical trials network).
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The guiding aim of Begonya's work is to achieve a better quality of life for the paediatric patients through research and the development of new therapies, and ensuring their active involvement to perform patient-centric clinical research and innovation.