Families contribute to the development of the Advanced Therapies Program at Sant Joan de Déu.

Active patient and family participation is a cornerstone of the research and innovation identity driven by the Institut de Recerca Sant Joan de Déu (IRSJD). In this spirit, a group of parents whose children are undergoing these treatments recently collaborated on reviewing the new Advanced Therapies Program, offering proposals and recommendations aimed at improving the experience of families participating in clinical trials and gene and cell therapies.

Families call for more information, training, and tools to access research and clinical trials

During the working session, families from various regions of the country-all with experience in advanced therapy clinical trials-analyzed different aspects of the plan and shared their needs, priorities, and expectations. Key takeaways included the importance of providing accessible, high-quality information on basic research, existing lines of inquiry, and leading experts for specific diseases. Participants highlighted the need for training initiatives for both families and professionals, as well as technological tools to locate relevant information on research, registries, or clinical trials at national and international levels.

Psychological support deemed essential

Families also emphasized the importance of incorporating psychological support-through both individual and group sessions-during participation in clinical trials, particularly for complex or long-term studies. Additionally, the role played by nurses in the Clinical Trials Unit was highlighted, as was the importance of having a dedicated contact person throughout the study. Another topic addressed was the situation of families who must travel or temporarily relocate to access innovative treatments. In this regard, the group proposed creating specific informational materials to facilitate the reception and guidance of families arriving at Sant Joan de Déu, as well as those needing to undergo experimental treatments at other national or international centers.

Patients and families call for a more active role in the design and monitoring of clinical trials

Finally, the families expressed their interest in playing an ongoing role in the rollout of the Advanced Therapies Program. Key proposals included the creation of a permanent parent group to support the plan's development, the establishment of two-way participation mechanisms, and the regular reporting of results and decisions made based on their recommendations. There was also a proposal to strengthen patient and family involvement in the design of clinical trials promoted by Sant Joan de Déu.

This initiative reflects the commitment of Sant Joan de Déu Hospital and the Institut de Recerca Sant Joan de Déu to systematically integrate the patient and family perspective into biomedical research, recognizing them as essential partners in developing innovative therapies that better meet the real needs of those living with complex diseases.