JOIN4ATMP webinar series kicks off with strong call for earlier and meaningful patient involvement in ATMP trials

On 14 April 2026, JOIN4ATMP launched its new webinar series dedicated to exploring how patient involvement can transform the design of advanced therapy medicinal product (ATMP) clinical trials. Hosted by EURORDIS, the first session brought together more than 80 participants and a diverse group of stakeholders, including patients, patient representatives, researchers, clinicians, developers and regulators to share real-world experiences and identify what makes patient engagement truly impactful.

The discussion highlighted a shared understanding across all stakeholder groups. While patient involvement is widely recognised as essential, it is still too often implemented too late and in a limited or purely formal way.

Across the different perspectives, a joint set of key messages emerged:

• Earlier involvement is critical
  Patient engagement should begin at the concept and preclinical stages, not only during clinical trial design and execution.
• From “tick-box” to meaningful collaboration
  Engagement must be structured, continuous and have a clear impact on decisions, rather than being included only to fulfil requirements.
• Patients improve trial quality and relevance
  Their input helps ensure feasibility, reduces burden and aligns outcomes with real patient needs.
• Knowledge gaps exist on both sides
  Patients need clearer information on clinical research, while researchers and developers need better understanding of how to engage patients effectively.
• Structural and practical barriers remain
  Limited time, resources, lack of standardised frameworks and insufficient recognition or compensation for patient contributions hinder meaningful involvement.
• Patient organisations are key drivers
  Beyond participation, they can actively drive research forward, from building registries to attracting industry investment and advancing treatment opportunities.

The webinar reinforced that patient involvement must become a core element of ATMP development, rather than an add-on. Strengthening collaboration, improving education and introducing more structured approaches were identified as essential steps forward.

Insights from this first session will directly inform the JOIN4ATMP Roadmap and recommendations, aimed at enabling more effective and patient-centred ATMP trials across Europe. A second webinar, planned for 15 June 2026, will further refine these actions together with stakeholders.

Here you can watch the recording of the Webinar #1.