What are patients’ needs and how to improve the development of medicines? 

First c4c Multi-Stakeholder Meeting on paediatric Inflammatory Bowel Disease (IBD). 

c4c held its first International Multi-Stakeholder Meeting (MSM) on paediatric Inflammatory Bowel Disease (IBD) virtually on 14-15 April 2021. Over 100 individuals participated, representing patients and advocates, clinicians, academics, pharmaceutical companies and regulators. The meeting was organized with the participation of the European Medicines Agency (EMA) and the Food and Drug Administration (FDA).

The meeting aimed to propose a strategy to address the unmet needs of paediatric patients with IBD through science, prioritisation of paediatric compounds in development, introducing innovative development pathways and increasing accessibility for all patients.

Day 1:  Setting the scene

Each stakeholder provided their perspective and existing networks and registries in the field of paediatric IBD were presented. It became apparent there are several important initiatives which have been developed and could support innovative and more efficient development pathways.

Day 2: Panel discussions

Two panel discussions were held with multi-stakeholder experts, patients and advocates, allowing a deep dive into the questions: 1. How to best extrapolate? and 2. How best to use data from sources other than clinical trials?. This paved the way for the development of a potential strategy to take forward, allowing for improved multi-stakeholder co-operation in the field of paediatric IBD and improved development of innovative medicines.

Over the two-day meeting, four patients, including two teenagers and young adults shared their experiences of living with their chronic disease. They showed their interest to engage and partner with stakeholders to develop innovative medicines.

 What next?

The MSM Programme Committee will use the valuable information from this meeting to agree a roadmap for continuing discussions and publish a manuscript of the meeting in a scientific Journal.

This successful meeting showed the potential value of multi-stakeholder discussion and working together in paediatric fields.