The Biobank of Vall d’Hebron University Hospital (HUVH) has received funding from the European PERIFORMANCE project to promote the donation of biological samples from minors with no signs of disease. The aim is to facilitate access to paediatric control samples, which are essential for advancing research into childhood cancer and other paediatric conditions.

Control samples, obtained from individuals with no signs of disease, are needed to compare them with those from affected patients and to gain a better understanding of the mechanisms underlying diseases. Having these samples available helps improve research, diagnosis and the early detection of different conditions.

The initiative plans to integrate sample collection into healthcare procedures that are already scheduled, so that children do not have to undergo additional interventions or experience any added inconvenience or discomfort. The Biobank’s integration into the extensive healthcare pathways of Vall d’Hebron University Hospital and the large number of patients treated there will make it possible to identify opportunities to collect samples that are valuable for research, without causing any harm to children.

According to Isabel Novoa, Director of the Vall d’Hebron Biobank, “having paediatric control samples available is essential for advancing biomedical research and gaining a better understanding of the diseases that affect children. To make this possible, it is essential for families to have clear information about the value of donation, how it works and the safeguards that accompany it. Families’ trust and participation are key to building stronger and more responsible paediatric research”.

The participation of families and healthcare professionals at the heart of the initiative

One of the project’s objectives is to develop communication materials aimed at families and healthcare professionals to explain the value of paediatric sample donation, how the process works and the ethical and quality safeguards that accompany it. It also aims to identify strategies to involve healthcare professionals in sample collection, taking into account healthcare pathways, ethical aspects and information needs.

One of the initiative’s most innovative aspects is incorporating the perspectives of patients themselves into the design of the donation campaign. Asking healthy individuals to donate biological samples for research is an especially sensitive issue, particularly when minors are involved. For this reason, the project aims to involve families, adolescents and children in developing a campaign that takes their concerns and needs into account.

To this end, discussion groups will be organised with adolescents aged between 13 and 17 and family members or legal guardians associated with the YPAG (Young Patients Advisory Group), as well as with healthcare professionals from Vall d’Hebron University Hospital, paediatric researchers from Vall d’Hebron Research Institute (VHIR) and Biobank professionals. In addition, the perspectives of children aged between 4 and 7 will be gathered through an art workshop, in which the drawings may be incorporated into the initiative’s communication materials.

Based on this participatory work, communication strategies will be defined for a pilot donation campaign, along with an action plan to establish the pathways for donation, sample collection and use. The project also plans to create a register of potential healthy paediatric donors, known as the Donor Call Hub.

More participatory and inclusive paediatric research

The initiative is aligned with the 2026–2030 Strategic Plan for Paediatric and Perinatal Research, which promotes more participatory and inclusive research, involving patients, families and professionals in the different stages of research.

The HUVH Biobank is a biomedical research support unit that manages human biological samples and makes them available to the research community in accordance with the required quality standards. Through this initiative, the aim is to make progress towards establishing a sample bank from a healthy paediatric population that stands out for the quality and diversity of the samples available.

According to the team behind the initiative, there are currently no biobanks of healthy paediatric populations offering the quality standards and diversity that this initiative aims to achieve. Once established, the sample bank will be able to serve both VHIR researchers and professionals from other centres conducting research in the field of paediatrics.

PERIFORMANCE: more ethical and people-centred cancer research

PERIFORMANCE is a European project that aims to strengthen the participation of the different stakeholders involved in cancer research and address its ethical, legal and social implications. In a context in which technologies such as artificial intelligence and the European Health Data Space are playing an increasingly relevant role, the project promotes the development of scientific and technological advances in an equitable and transparent manner, aligned with society’s values.

Through reviews of the available evidence, interviews, focus groups, case studies, training and funding for participatory pilot initiatives, PERIFORMANCE aims to identify good practices to strengthen public trust and ensure that research responds to people’s needs. The project is part of the objectives of the European Union’s Cancer Mission and Europe’s Beating Cancer Plan, which promote research, prevention, early diagnosis and innovation in cancer care.

This project has received funding from the European Union under the PERIFORMANCE project, pursuant to Grant Agreement No. 101216808.

Funded by the European Union. The views and opinions expressed are, however, those of the author(s) only and do not necessarily reflect those of the European Union or the granting authority. Neither the European Union nor the granting authority can be held responsible for them.