GAPP Patient Advisory Board Continues Its Contribution to the Study Protocol Review Through Third and Fourth Workshops
The Patient Advisory Board (PAB) of the Gabapentin in Paediatric Pain (GAPP) Study held its third and fourth online workshop, continuing its active contribution to the development of this important paediatric clinical research initiative.
During the workshops, PAB members completed the review of the full GAPP study protocol, providing feedback based on their experiences and perspectives.The review follows the principles of the SPIRIT (Standard Protocol Items: Recommendations for Interventional Trials) guidelines, helping to ensure that the study remains clear, relevant and responsive to the needs of children, adolescents and their families.
Beyond reviewing the protocol, PAB members shared their perspectives on what meaningful participation in the GAPP Study should look like, putting forward practical proposals to make participation easier for children and families. These included dedicated psychological support for participants, conducting some study visits closer to patients’ homes, and reimbursing study-related expenses, several of which are already being taken forward by the Sponsor.
Voices from the Patient Advisory Board
The active participation of PAB members represents an essential contribution to the GAPP Study. Their involvement reflects the value of integrating patient and caregiver perspectives into paediatric clinical research.
Testimonial from Mimi Nefeli
“To me, being part of the Patient Advisory Board has been a truly meaningful experience. It has given me the opportunity to help ensure that the voices of children, young people, and their families are considered in every stage of the research process. I believe that patient and caregiver involvement makes every research more relevant, inclusive and impactful, better aligning it with the real needs of the communities it aims to serve.”
Testimonial from RSP APS
“Rare Special Powers (RSP) is honored to have contributed to the TEDDY Network’s Patient Advisory Board (PAB). By participating directly in the study development process, we shared key expertise to ensure children and teenagers have a stronger, active voice in research. We thank the TEDDY Network for this outstanding collaboration and stand alongside them in empowering young people and educating future healthcare professionals worldwide.”
Testimonial from Valentina Jalby
“As soon as I heard about the GAPP project, I was very excited about the opportunity to get involved. I believe this study is a great way to encourage the inclusion and promotion of the voices of people living with chronic pain. Being part of the GAPP study is a valuable opportunity to ensure that the patient voice is represented in clinical trials and to play an active role in shaping the future of healthcare. I am particularly excited to contribute my perspective and experiences to help make research and clinical studies more patient-centred.”
TEDDY Network sincerely thanks all PAB members for their continued commitment, constructive feedback and valuable contribution to the GAPP Study. Their engagement demonstrates the importance of meaningful collaboration between researchers, young people, patients and caregivers in shaping future paediatric clinical research.