Case studies
Rare disease: landscape analysis across Europe, Japan, and US
Objective
Understand what life is like for people living with a rare disease
Outcomes
Created framework for research
Carried out research in a number of countries and identified all relevant stakeholders
Presentation and reporting
Developed engagement strategy and plans for disease areas and identified partnership opportunities.
Focus groups to better understand the specific disease
Objective
Gather information and insights from patients, carers, patient organisations and healthcare professionals to gain a deeper understanding of the patient experience, their symptoms, burden of disease, and unmet medical needs
Outcomes
Better understanding of the medical condition from different perspectives
Understanding the role of a carer
Providing informed perspectives and recommendations.
Clinical Trial Protocol Design
Objective
Understand and gain insights on what is important for patients and other stakeholders involved with clinical trials so that these insights are reflected in future study designs and conduct
Outcomes
Plan, organise and facilitate a patient and carer advisory board
Collation of key patient insights.