EURORDIS Community Advisory Board (CAB) Programme

The EURORDIS Community Advisory Board (CAB) Programme provides a structured model for meaningful patient engagement in rare disease research and clinical development. Community Advisory Boards are patient-led groups that bring together trained patient representatives and expert patients to provide informed input to research stakeholders through a transparent and organised process. The programme supports the establishment and functioning of CABs by providing guidance, training, capacity building, peer exchange and mechanisms to promote effective collaboration between patient communities and research sponsors.

For clinical trial protocol development, CABs can provide valuable insights into aspects of study design that directly affect patients and families. Patient representatives can contribute to defining research priorities, assessing whether proposed studies address meaningful unmet needs, reviewing eligibility criteria, evaluating study procedures and visit schedules, advising on recruitment and retention strategies, and identifying outcomes that reflect patient priorities. Their input can also support the development of participant information materials and communication strategies that are understandable and relevant for the target population.

The programme is particularly relevant for rare diseases, where limited patient populations, disease heterogeneity and high participant burden make patient-centred trial design essential. Early and structured engagement with patient communities can improve protocol feasibility, reduce barriers to participation and increase the likelihood that clinical trials generate evidence that is meaningful to patients, healthcare professionals and decision-makers.

Researchers developing rare disease clinical trial protocols can use the EURORDIS CAB model as a practical approach for establishing ongoing collaboration with patient experts throughout the research lifecycle. It complements methodological and regulatory guidance by ensuring that patient perspectives are integrated alongside scientific, statistical and operational considerations during trial planning.